Julie Dunn Eichenberg didn’t just find the cystic fibrosis community, she’s been part of it for more than 30 years as a proud CF aunt.

That personal connection is what makes this next chapter so meaningful.

Julie recently stepped into the role of Executive Director at BreatheStrong CF, where the focus is on helping people with cystic fibrosis live stronger, healthier lives through exercise, education, and empowerment. And while she brings decades of experience in leadership, fundraising, and relationship-building, she’s honest about getting used to the role.

She’s learning. Listening. Figuring out the day-to-day. And really taking the time to understand how she can best serve the community in this new position.

Before this, Julie spent 20 years at Turner Broadcasting System (now part of Warner Bros. Discovery), and later held leadership roles at Florida State University and Fan Data Insights. But no matter where her career took her, the CF community was always part of her life.

She’s also been deeply involved with the Cystic Fibrosis Foundation, serving as Chair of the Georgia Chapter and contributing at the national level.

We talk about what it feels like to step into a leadership role that’s so personal. The excitement, the pressure, and the responsibility that comes with it. Julie shares what she’s learning, what’s surprised her, and why her connection as a CF aunt continues to guide every decision she makes.

Because for Julie, this isn’t just a job,  it’s personal.

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Pete Proimos is an entrepreneur, a chronic illness advocate, and the founder of the Filotimo Foundation, a nonprofit dedicated to supporting individuals and families affected by cystic fibrosis. Diagnosed with CF as an infant, Pete kept his diagnosis private for decades. It wasn’t until his forties that he chose to speak publicly about living with the disease, and that brave decision has changed lives.

Pete is married to Annie, and together they are raising three children. His journey into fatherhood is part of what fuels his passion to make sure others with CF understand their options when it comes to building a family.

Joining him in this important conversation is Colin Thomas, who leads the Family-Building Program at the Filotimo Foundation. Colin also lives with CF and became a father of five through IVF. In addition to his advocacy work, he serves as Vice President of Operations at IVY Fertility. He brings both professional expertise and deeply personal experience to this discussion, sharing honestly about the challenges and triumphs of becoming a parent with CF.

One critical truth we discuss: Men with cystic fibrosis are not infertile because they don’t produce sperm. Most are born without a connected vas deferens — the tube that carries sperm — which makes natural conception difficult. But with medical support, including sperm retrieval and IVF, biological fatherhood is often absolutely possible.

This episode dives into the mission behind the Filotimo Foundation and the powerful work being done through its infertility and family-building program, work that is giving hope, clarity, and real options to families navigating CF.

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Those years at the bedside are what ultimately led Dr. Cohen into drug development, where he has spent more than 25 years working to turn scientific innovation into real-world therapies for people who are still waiting for better options. As the Chief Medical Officer of Arcturus Therapeutics, he brings both clinical perspective and urgency to the company’s work in mRNA-based therapies for cystic fibrosis and other rare diseases.

“Clinical trials aren’t just about science, they’re about people who are willing to help move the field forward.”

In this thoughtful and engaging conversation, Dr. Cohen reflects on how cystic fibrosis care has evolved over the past 35 years, from symptom management to breakthroughs in gene therapy and mRNA technology. Dr. Cohen discusses why clinical trials are essential to progress, especially for rare diseases, and why patient participation plays such a critical role in moving new therapies forward. Dr. Cohen also shares how the strength of the CF community continues to inspire his work, offering both realism and hope for the future of CF research.

You’ll also hear more about the personal side of this wonderful scientist! The Arcturus team packed Bonnell Foundation Hospital Bags with comfort products for caregivers, and CF adults for California CF Clinics. #teamwork

Clinical trials are an important step to understand whether a medicine works for its intended purpose.  Please see our active clinical trials below. For any questions email:  Community@ArcturusRx.com.

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What still makes me smile is how Julie and I were connected long before we ever met through the CF community… and we had no idea. We worked in the same building, in the same industry, at the same time. Both of us were in radio. I was a news reporter at WWJ, while Julie was first a morning show intern, then events team and finally, board operator for WYCD. Even our podcast editor worked at another station in that very same building. Proof that sometimes the universe plants people in your orbit long before it tells you why.

Julie’s career path reflects both her curiosity and her compassion. She’s worked in radiology, orthopedics, and labor and delivery. She’s supported students as a paraprofessional in an elementary school and worked in a group home for adults with intellectual disabilities. Today, she works at Target—and genuinely loves it. Wherever she goes, she brings the same energy: presence, kindness, and care.

At the heart of everything Julie does is a simple but powerful mission—to spread joy. She is deeply passionate about mental health advocacy, especially within the cystic fibrosis community. And despite the very real financial strain that comes with healthcare and insurance challenges, Julie continues to show up with an unwaveringly positive spirit. Not a performative positivity—but a grounded, generous kind that makes people feel seen.

If you take just one thing from Julie today, let it be this:
You are brilliant.
You are beautiful.
And you can do anything.

(Suicide was discussed in this episode. Anyone needing help can call or text #988). 

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The North American Cystic Fibrosis Conference is one of those places you attend to learn—but it’s also a place where you meet people who quietly leave a lasting mark. One of those people is Certified Child Life Specialist Abby Rose.

Abby works at Seattle Children’s Hospital, supporting both the Cystic Fibrosis program and Pediatric Hemodialysis. Originally from Wisconsin, she earned her bachelor’s degree in Psychology and Family Studies from the University of Wisconsin–Eau Claire, followed by a master’s degree in Child Life from Edgewood College.

In her role, Abby focuses on outpatient care, working closely with children and families to create individualized coping plans. She supports kids through procedures many of us take for granted—blood draws, throat swabs, vaccinations, while also helping families navigate pill swallowing, treatment tolerance, sibling support, and the everyday challenges that can feel overwhelming in CF care.

People like Abby made a profound difference for kids like one of my daughters—children who are frightened by procedures or don’t fully understand what’s about to happen to them. Child Life Specialists play a critical role in hospital settings, helping children feel safer, more informed, and more in control during some of their most vulnerable moments.

Today, I’m excited to talk with Abby about the work she does—and why it matters so deeply.

In our conversation, we’ll explore:

The Beads of Courage program and why it’s so meaningful to children and families

Why Abby is such a strong advocate for transparency, open communication, and the rights of patients and families

What draws her personally to Child Life work, and why she believes in it so deeply

And some of the “tricks of the trade”—the practical tools and techniques she uses to help kids feel calmer and more cooperative during procedures like blood draws

This is a conversation about care, trust, and the people who help make hard moments just a little bit easier.

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Sheri and Shawn share a uniquely intertwined journey. Shawn also lives with CF and is a double lung transplant recipient, and together they navigate post-transplant life with grit, transparency, and determination. They openly share both the challenges and the victories, offering a real and unfiltered look at what it means to live, and love, through cystic fibrosis.

Through storytelling and advocacy, Sheri uplifts the CF community and supports CF-focused nonprofit organizations, drawing insight directly from lived experience. With a fascinating background in the music industry, Sheri also brings a distinctive lens to conversations about identity, judgment, and the courage it takes to show up authentically. Her story isn’t about the absence of hardship, it’s about perseverance, purpose, and choosing hope, even in the hardest moments.

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Those simple but profound words from Dr. Steve St. Onge set the tone for this conversation, and for why this work matters so deeply.

Science has always fascinated me. I often joke that I’m not smart enough to be a scientist, but I have endless respect for the people who are, especially those who can take incredibly complex ideas and explain them in a way the rest of us can truly understand. This is why I know you're going to love my conversation with Dr. St. Onge. 

Steve is the Chief Business Officer at Clarametyx. Dr. St. Onge is a PharmD and MBA with more than 15 years of experience spanning clinical care, medical affairs, and leadership in biotechnology. What stands out most about Steve isn’t just his impressive résumé, it’s his ability to clearly explain the science, the strategy, and, most importantly, the urgency behind the work Clarametyx is doing.

I first met Steve in person at the North American Cystic Fibrosis Conference (NACFC) in Seattle, where we had the opportunity to really connect and talk about Clarametyx’s approach. Their work focuses on targeting biofilm-driven inflammation and progressive lung damage, an area of significant unmet need for people living with chronic respiratory diseases, including cystic fibrosis. In this conversation, Steve breaks down what biofilms are, why they’re so difficult to treat, and how Clarametyx is thinking differently about tackling the inflammation and lung damage they cause.

We also talk about the long road of drug development, the responsibility that comes with working in rare disease, and why the phrase “patients are waiting” isn’t just a saying, it’s a call to action. This episode is an honest, accessible, and hopeful look at science in motion, and at the people behind the research who are driven by the patients counting on progress.

If you’ve ever wanted a clearer understanding of how innovative science moves from idea to impact—and why time matters so much, his is a conversation you won’t want to miss.

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Somer Love has spent her life choosing hope, dreaming big, and showing up fully for each day. Diagnosed with cystic fibrosis at just 11 months old, Somer has grown into a powerful and compassionate advocate for the CF community.

Guided by her belief that “Every moment, every day is worth celebrating,” Somer brings joy and purpose into everything she does. She often reminds others that “laughter is key,” a mindset that has helped carry her, and those around her, through the challenges of life with cystic fibrosis.

Through her work, Somer is dedicated to raising awareness, educating others, and offering hope, especially to families navigating a new CF diagnosis. In 2001, she founded Love to Breathe®, a platform created to educate, spread awareness about cystic fibrosis, and share love and connection around the world.

Big on birthdays, Somer’s parents made celebration part of her story in an unforgettable way. Every year, they placed Somer’s photo on a billboard. What began as a birthday tradition became something much bigger, raising awareness about cystic fibrosis in a way that stops people in their tracks. What that billboard did for awareness will give you chills. It’s something you will never forget. You’ll have to listen to the podcast to hear the story!

Somer knows that fighting CF isn’t something anyone can do alone. Her journey is deeply rooted in the strength of her support system and the community that stands beside her. She continues to advocate not only for her own future, but for a cure, for everyone living with cystic fibrosis.

Somer sums up the reason to advocate. This quote is on her website: "The goal isn't to live forever, but to create something that will"-Chuck Palahniuk

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Dr. Elizabeth Ames and Dr. Caleb Bupp are deeply committed to their patients. But like so many clinicians today, they’re spending an extraordinary amount of time battling insurance companies instead of practicing medicine.

Between prior authorizations, step therapy requirements, and outright coverage denials, physicians and their teams are buried in paperwork, often at the direct expense of patient care. Time that should be spent listening, diagnosing, and treating is instead consumed by forms, phone calls, and appeals.

Boston Globe reporter Jonathan Saltzman raised the concern and Dr. Ames brought it to my attention. The reporter talks about, a new program rolled out by Blue Cross Blue Shield of Massachusetts. The insurer says the initiative is designed to control rising healthcare costs for its 3 million members, noting that costs have increased by 30 percent since 2021. But, the program specifically targets physicians who bill for the most expensive visits. The reason for the increased expense, which is discussed in our podcast, is because doctors are choosing to spend more time with rare disease patients who have complicated health issues. They need to spend more time with complex medical needs patients than say, someone with a sore throat.

Drs. Ames and Bupp warn that this approach fundamentally misunderstands patient care, particularly for those with complex or rare conditions. “These patients don’t need less time; they need more” says Dr. Ames. Physicians argue that policies like this risk rushed appointments, strained doctor/patient relationships, and poorer outcomes. Nowhere is this more concerning than in the rare disease community, where delays and denials can be devastating.

Dr. Elizabeth Ames and Dr. Caleb Bupp talk about what this looks like in real life. As pediatric geneticists, they see firsthand how insurance barriers impact families already navigating diagnostic odysseys, uncertainty, and fear. Their work sits at the intersection of cutting-edge science and deeply human stories, and insurance interference often disrupts both. Dr. Ames, “Usually we get faxes saying, this has been denied and we start working on it. But the family gets a letter that the drug they need, the process is delayed by a “no”. We try and have good communication and say, “hey, we got this denial,” we’re working on it. But I think it’s deaths by a thousand cuts for the family. Families take the denial as, “I’m not worth of coverage, and that’s really hard”. Dr. Bupp says they have had to hire genetic counselors, a job that didn’t exist even 5 years ago, “We have a job description in our organization for it now because of the complexities that come with trying to unravel these insurance situations”.

We should also note that Dr. Ames, Dr. Bupp, and I all serve on the Rare Disease Advisory Council (RDAC) in Michigan. “I think rare disease advocacy, there is power in numbers. One person can be a huge difference maker, but it’s not one plus one equals two. It really exponentially grows, and I think with things like rare disease advisory councils, that gives you a better connection within your state, for state government and for advocacy. And I also think, or I hope, that it gives a place for an individual to plug in and that can then magnify and amplify. their voice so that they’re not alone”. Many states have RDAC’s, You can see if your state has an RDAC. For more on the Michigan RDAC

In this article and in the podcast we are not speaking on behalf of the council, but it’s important to understand why bodies like RDAC exist in the first place. Michigan is home to approximately one million people living with rare diseases, and the RDAC was created to ensure their voices, and experiences help shape policy. RDAC meetings are open to the public, and anyone in Michigan can participate and offer public comment. We hope you join our meetings via zoom (sometimes hybrid).

This conversation isn’t just about insurance policies. It’s about time, trust, and whether our healthcare system truly serves patients, especially those with the most complex needs. Speak up, share your story. Advocate. Make a difference, Mold the future, for future generations.

To look at the Everylife Diagnosis Odyssey https://everylifefoundation.org/delayed-diagnosis-study/ discussed in the podcast.  Everylife impact of diagnosis: https://everylifefoundation.org/burden-study/

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It is always inspiring to speak with true innovators on this podcast, the people who don’t just follow the science, but actively push it forward, turning ideas into real-world solutions that change lives. We are honored to welcome Dr. Jeffry Weers whose work has profoundly impacted the cystic fibrosis (CF) community and beyond.

Dr. Weers is a distinguished pharmaceutical scientist with more than 35 years of experience designing and developing novel drug-delivery systems. Throughout his career, he has focused on innovative treatments for CF, working across formulations, biologics, small molecules, and combination products. His achievements include an extensive patent portfolio and a remarkable publication record, but what truly sets him apart is his ability to translate ideas into treatments that improve patient lives.  I found that many scientists like Dr. Weers are soft spoken. They don't want to brag about their scientific successes, they just want their work to speak for itself.  Dr. Weers is so darn smart!  He won't toot his own horn, so I must!  He's a great person who is filled with so much hope for the future.

One of Dr. Weers’ most notable contributions is the invention of the Tobi Podhaler, a device that transformed how inhaled antibiotics reach the lungs. For people living with CF, this innovation has meant more effective, easier-to-administer treatment, significantly improving daily quality of life. His work exemplifies the power of scientific innovation to directly impact patient care.

Dr. Weers delves into both the breakthroughs and the challenges of drug development. He shares insights into the ongoing hurdles of developing inhaled medications, including inhaled insulin, and emphasizes the regulatory obstacles that can slow the introduction of new anti-infectives. Yet, he remains optimistic about the future, highlighting the role of collaboration among scientists and the potential of AI to enhance medical imaging, diagnosis, and patient outcomes.

Dr. Weers also stresses the critical importance of addressing infectious diseases in CF patients and the responsibility of the scientific community to advocate for better treatments. Beyond his professional achievements, he reflects on the personal side of being a lifelong scientist, sharing how interests like farming provide balance and perspective in a demanding career.

I particularly loved recording this episode because Dr. Weers has a rare ability to make complex science accessible, explaining the “why” behind innovations in a way anyone can understand. For anyone curious about the intersection of science, medicine, and human impact, this conversation is both enlightening and inspiring.

To watch a fabulous video that explains the creation of what it takes to get medicine into the lungs, view here: You Tube link: https://www.youtube.com/watch?v=fwglM8Zo4m0

Inhaled drug delivery in CF/ YouTube link: nother YouTube link: https://youtu.be/iV27VdieQbo

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But in high school, everything shifted. Daelyn made the brave decision to stop running from her diagnosis and start embracing it as part of who she is. And that choice changed her life.

Now 25, she proudly lives with CF and uses her experiences to raise awareness, connect with others, and offer hope. Her message is simple but powerful: even in the hardest moments, there is strength, there is goodness, and there is always a way forward.

I’m so excited for you to hear her story.

To connect with Daelyn visit her on IG: https://www.instagram.com/daelyn_j/

To connect with Somer Love her IG is Love to Breath: https://www.instagram.com/lovetobreathe/

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For Chad Eddy, the fight against cystic fibrosis isn’t abstract, it's personal. He’s the proud uncle of two nieces born with CF. One is still living.

When his goddaughter was born in 1998, (he asked their names not be used) the second of his nieces diagnosed with cystic fibrosis, Chad’s world changed. He quickly realized that simply walking in charity events or asking friends and family to donate wasn’t enough. Love demanded action. Hope demanded movement.

He wanted to do more. He wanted to be part of the generation that finds the cure. It's his motto.

In 2017, Chad’s heart broke when one of his nieces lost her courageous fight with CF. But even in grief, he found his purpose. He made a promise to her, and to his living niece, and to every person living with CF, that he would keep running toward a cure.

Now, Chad isn’t running for a medal. He’s running for time. Time for those who can’t breathe freely. Time for families waiting on a cure. Time for the breakthroughs that can change everything.

His mission has taken shape in an extraordinary endurance challenge: running 6.5 miles every 6.5 hours for 65 straight hours , all to raise $65,000 for cystic fibrosis research.

This is not a race. It’s a test of heart, exhaustion, and purpose, run one step, one story, one promise at a time.

Already, more than 80 donors have stepped forward, contributing over $11,000 to support Chad’s mission. But this is no longer just a personal challenge, t’s a movement.

Through a short documentary film, that movement, and its heartbeat, will be captured forever.

For everyone still fighting for breath, Chad runs because every moment counts. And he won’t stop until cystic fibrosis is a disease of the past.

For more information and to donate:: https://fundraise.cff.org/roseup2025/65milesin65hoursforCF 

To see the trailer for Generation: Cure: https://youtu.be/YyI_rNXuNAI?si=pk_tBY3NZkdtdfTn

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Under Jennifer’s direction, New Hope has launched new loss-specific grief groups, expanded programming, and reached grievers in more communities than ever before. She continues to build on her expertise through national training with the National Alliance for Children’s Grief and other organizations, ensuring that every program New Hope offers is trauma-informed, compassionate, and deeply effective.

Jennifer’s community involvement runs wide and deep — she serves on multiple local health and wellness councils, partners with school districts, and facilitates leadership and family development programs, includingThe Leader in MeandThe 7 Habits of Highly Successful Families. She’s also been invited to speak and moderate at events like Hegira Health’sFocus on Zerosuicide prevention conference, sharing insights on resilience and healing.

Today, Jennifer not only leads New Hope but helps train other organizations on how to support those in grief. She’s currently helping design age-specific grief curriculum for students — empowering young people to understand loss, express emotion, and find hope. She’s seen the full circle of healing firsthand: those once supported by New Hope returning to offer that same compassion to others, creating a community where no one grieves alone.

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Dr. Hemez brings a remarkable blend of science, creativity, and purpose to the fight against cystic fibrosis. Colin was born in France and raised in the high-desert town of Los Alamos, New Mexico, an environment steeped in scientific discovery. Summers interning at Los Alamos National Laboratory sparked his early fascination with how innovation can change lives.

At Yale, he explored the intersection of engineering and art, studying biomedical engineering alongside art history to understand both the precision of science and the elegance of design. But it was a research trip to the Arctic University of Norway that set his path in motion. While building mathematical models of antibiotic resistance, a challenge many people with cystic fibrosis face, Colin discovered his true calling.

Today, he’s a PhD student in Dr. David R. Liu’s renowned laboratory at Harvard, working at the cutting edge of gene editing for cystic fibrosis. Every day, Colin is pushing boundaries, imagining a future where science doesn’t just treat CF but has the power to rewrite its story.

We had to so much fun talking in this podcast. Born in France we talk about Colin’s wonderful siblings and parents. They’re all incredibly smart and making a huge difference in our world.

Outside the lab, Colin reflected on the grounding role of art, music, and outdoor exploration, coping mechanisms that keep him connected to the world he’s trying to impact. Looking ahead, he’s both hopeful and driven: gene editing for cystic fibrosis is no longer a distant dream but a rapidly approaching reality with global implications. His aspirations are bold, but so is the science.

In his view, the future of CF research depends on collaboration, imagination, and staying rooted in why the work matters: to bring healthier, longer lives within reach for every person living with this disease. We sure love his passion for science. You won’t want to miss this Amazing Podcast. 

Disclaimer: "The opinions expressed by Colin Hemez are his own and are not to be taken as representative of the positions of the Broad Institute, Harvard University, or the Cystic Fibrosis Foundation."

To watch Colin's PhD  https://drive.google.com/file/d/1HizIGiqGdKDgIifT7HF9t0UDVgv0tOKE/view

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A Conversation with Dr. Michael Welsh: The Science That is Saving Lives

It’s always such a privilege to feature CF icons on the podcast. Over the years, we’ve been fortunate to host some of the most influential names in cystic fibrosis research, including Dr. Francis Collins, the former director of the NIH and one of the authors of the Human Genome Project, and his longtime friend Dr. Mitch Drumm, who was working on his doctorate when the CF gene was discovered back in 1989.

I actually saw Mitch recently at a dinner, and as many of you know, Dr. Collins continues to be a tireless advocate for good science and for sharing its importance with the world.

And now, we add another legend to that list: Dr. Michael Welsh from the University of Iowa.

Dr. Welsh tells his story beautifully in the University’s film Breath by Breath: Living with Cystic Fibrosis. In it, he describes how his curiosity about the CFTR protein led to groundbreaking discoveries that ultimately laid the foundation for CF therapies, the very treatments that have changed (and saved) thousands of lives, including the lives of my daughters.

Dr. Welsh’s career is extraordinary, spanning decades of research, mentorship, and discovery. He’s the Carver Professor of Internal Medicine and Molecular Physiology and Biophysics at the University of Iowa, and from 1989 to 2024, he served as an Investigator with the Howard Hughes Medical Institute. He currently directs both the Pappajohn Biomedical Institute and the Cystic Fibrosis Research Center.

We’ve linked both his full bio and the film in the show notes, and I highly encourage you to check them out. His accolades could fill pages, actually, an entire book! We had so many laughs too in this podcast! So much fun. You’ll really enjoy it.

Dr. Welsh shared insights not only into his scientific journey, but also the heart behind the work. He recently received the Lasker Award for pioneering CF research that led to life-saving therapies, a recognition that celebrates decades of persistence, curiosity, and collaboration.

We discussed so much:

• How his team began unraveling the mystery of the CFTR protein and what that breakthrough moment felt like
• What it’s like to see patients thriving because of the treatments that grew from that work
• Why the University of Iowa decided to produce Breath by Breath, and what the film means to him personally
• What new treatments and discoveries he’s exploring now

Hearing Dr. Welsh describe the intersection of science, hope, and humanity is powerful. You can tell that for him, this work isn’t just research, it’s a mission.

As the documentary shows, CF isn’t just a disease studied under a microscope. It’s a lived experience for patients and families, one that now includes real hope thanks to the breakthroughs made by scientists like Dr. Michael Welsh.

Biography:

Dr. Michael Welsh is the Carver Professor of Internal Medicine and Molecular Physiology and

Biophysics at the University of Iowa. From 1989-2024, he was an Investigator of the Howard

Hughes Medical Institute. He directs the Pappajohn Biomedical Institute and the Cystic Fibrosis

Research Center.

Dr. Welsh obtained an MD and completed an internal medicine residency at the University of

Iowa. He then trained in pulmonary medicine and research at the University of California, San

Francisco and physiology at the University of Texas, Houston.

Dr. Welsh and his colleagues discovered that the protein affected in cystic fibrosis is an anion

channel, elucidated its functional mechanisms, discovered ways that mutations disrupt function,

and showed that mutations can be rescued. This work led directly to development of medicines

that target CFTR and are highly effective for most cystic fibrosis patients. To understand disease

pathogenesis, he and his collaborators developed cystic fibrosis pigs, the first mammal, other

than mice, in which a gene was targeted to generate a disease model.

His clinical activities focused on pulmonary diseases. He has trained many physicians and

scientists and received the Distinguished Mentor Award, University of Iowa Carver College of

Medicine.

To watch the film, click here:  https://uihealthcare.org/cystic-fibrosis-research-iowa#documentary

To learn more about Dr. Welsh: https://internalmedicine.medicine.uiowa.edu/profile/michael-welsh

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Update State CF Center (Syracuse, NY) Social Worker Lejla Bush, who has worked with the CF community for over a decade, shares how Amish and Mennonite families navigate CF while staying true to their traditions. She explains the unique challenges, from financial hurdles without health insurance, to hospital care that must adapt to cultural practices, and the vital role of community support in helping families face this disease.

Most importantly, Lejla reminds us that while the cultural context is different, Amish and Mennonite parents hold the same hopes, fears, and love for their children as any other family affected by CF.

This episode opens a window into the powerful intersection of culture, medicine, and resilience.

We did a Q and A with some people in the Amish and Mennonite communities. Thanks to Lejla for sharing so much information about the Amish and Mennonite communities.

To see a letter of Q and A with one of the Amish patients click here: https://thebonnellfoundation.org/wp-content/uploads/2025/09/AmishLetter.jpg

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Summer Bauder is a remarkable woman whose story embodies compassion, perseverance, and global impact.

Summer’s journey began as a stay-at-home mom managing a bustling household a life filled with love, chaos, and purpose. But everything changed when her brother-in-law’s daughter was diagnosed with cystic fibrosis (CF). What started as a family connection to CF grew into a calling that now spans continents.

Today, Summer serves as a key volunteer for CF Vest Worldwide, a nonprofit that provides life-changing airway clearance vests to people with CF who can’t afford them. Her days are filled with cleaning, sorting, and shipping donated vests to families across the globe, and sometimes, personally delivering them.

From India to Colombia to Ecuador, Summer has met families whose gratitude reminds her daily why this work matters. She shares powerful, heartwarming moments, like watching a child take easier breaths for the first time, and the challenges of navigating logistics, language barriers, and limited resources.

Next up? Honduras, where Summer delivers 10 vests to families in need.

Balancing her large family and international volunteer work hasn’t been easy, but Summer says her experiences at home prepared her for the organizational and emotional demands of this mission. Her story is a reminder that one person — one family — can make a global difference.

This episode shines a light on the power of community, family support, and the ripple effect of kindness.

If you’d like to support Summer’s efforts, CF Vest Worldwide is currently accepting donations of child-sized garmentsused to distribute vests to children with CF around the world.

What's her connection? Her why?  It's her brother, Josh Bauder.

To see more about Summer's work, watch her video: https://youtu.be/sHSB9kIp060

To contact CFVWW: rod@cfvww.org

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Today, she’s a single mom of twins, an unstoppable advocate who’s raised over a million dollars for cystic fibrosis research, and the founder of Just One More Breath. Her story is proof that while CF is tough, Jennifer is tougher, and that hope, when held fiercely, can change everything.

Jennifer was born in the 1970s with cystic fibrosis, a time when the disease was still cloaked in uncertainty and fear. Few children with CF lived to see adulthood, and the treatments that exist today were still decades away. From the very beginning, every breath she took was a small act of defiance. Hospital rooms became her playgrounds, IV poles her silent companions, and the steady rhythm of nebulizers the soundtrack of her childhood.

But even in those sterile rooms filled with machines and medicine, Jennifer’s spirit burned bright. She refused to let CF define her — or defeat her. Through endless hospital stays, setbacks, and the exhausting daily grind of treatments, she found reasons to laugh, to dream, and to keep fighting. Every milestone, every birthday, every deep breath, became a victory.

Then came 2019, a year that would rewrite her story once again. With the arrival of Trikafta, the groundbreaking CF modulator, Jennifer’s world shifted. Suddenly, life felt lighter — her lungs stronger, her body more capable. For the first time, she could picture a future not limited by her disease but expanded by possibility. She could plan, imagine, and live, truly live, in ways she once only dreamed of.

Yet Jennifer’s story isn’t just about survival; it’s about transformation. Rather than turning inward, she turned outward — channeling her strength into action. She’s raised over a million dollars for cystic fibrosis research, driven by the belief that every dollar brings us closer to a cure. She became a mother to twins through the extraordinary gift of her sister, proving that family and love can find a way even when the odds seem impossible.

Today, Jennifer stands as a single mom, a tireless advocate, and the voice behind Just One More Breath, a platform dedicated to raising awareness, sharing stories, and inspiring others to keep pushing forward ... one breath at a time.

Her journey is a powerful reminder that life with cystic fibrosis is unpredictable, yes, but it is also breathtakingly beautiful. It’s a life lived with intention, courage, and grace. Jennifer’s story teaches us that even when the odds seem insurmountable, resilience can turn pain into purpose, and hope can carry you through the darkest storms.

Because for Jennifer, every breath is more than survival.
It’s a celebration of strength, of love, and of the limitless power of the human spirit.

Jennifer on IG: https://www.instagram.com/just.onemorebreath/?hl=en

Website: https://jennifer-mckinnon.com/?

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Sometimes you come across someone whose work changes the way you think about an entire field. That’s exactly what happened when I read about Dr. Wendy Chung in Rare Revolution Magazine.

Dr. Chung is one of those rare people who stands at the intersection of science, medicine, ethics, and humanity. She’s a clinical and molecular geneticist, the Chief of Pediatrics at Boston Children’s Hospital, and the Mary Ellen Avery Professor at Harvard Medical School. She leads NIH-funded research into the genetics of conditions like pulmonary hypertension, autism, birth defects, and a wide range of rare diseases. She’s advanced newborn screening for life-threatening disorders like spinal muscular atrophy and Duchenne muscular dystrophy — work that means the difference between life and death for many families. She’s been recognized with the Rare Impact Award from NORD, is a member of the National Academy of Medicine, and is a leading voice on the ethics of genomics.

But titles and accolades only tell part of her story. What stands out most is her deep commitment to the people behind the science, the families living day in and day out with conditions that most of the world has never heard of.

When we spoke, Dr. Chung described what she calls the “triple threat” to the rare disease ecosystem:

Misinformation in health that spreads faster than facts and erodes trust in science.

Lack of access to healthcare, leaving too many without the treatments they need, when they need them.

Insufficient investment in research, slowing the pace of discovery and delaying life-saving therapies.

Each of these challenges is daunting on its own, but together they create a fragile and often hostile environment for progress in rare disease research and care.

She pointed out that while most genetic conditions are rare individually, collectively they are surprisingly common — affecting millions worldwide. That’s a staggering thought, especially considering how little public awareness and funding rare diseases often receive.

We also talked about autism, a condition she has studied extensively. She emphasized that autism is a spectrum, with multiple causes, the majority of which are genetic. Understanding that complexity is crucial, not only for advancing science but also for helping families cope and make informed decisions.

One of the threads running through our conversation was the urgent need for better communication in science. In an age where misinformation spreads in seconds, the ability to convey facts clearly and accessibly isn’t just a nice skill — it’s a necessity. Miscommunication or confusion doesn’t just impact public opinion; it influences policy decisions, research funding, and the direction of healthcare itself.

Dr. Chung stressed that advocacy matters at every level — from the conversations parents have with their children’s doctors to the policies shaped in Washington. Community engagement isn’t just a feel-good idea; it’s one of the most effective ways to accelerate progress. Patients, families, scientists, and policymakers all have a role to play, and collaboration among them is where breakthroughs happen.

In the end, our conversation left me with two truths. First, that rare disease progress depends on persistence from so many people. The researchers who refuse to give up, from families who continue to fight for answers, and from advocates who push for change. Second, that truth itself is a kind of medicine. The more accurately, compassionately, and consistently we can communicate about rare diseases, the better chance we have at building a healthcare ecosystem that works for everyone.

Dr. Wendy Chung is leading that charge, not just in the lab, but in the public square. And in this fight, both matter equally.

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Huge thanks to our co-chair, Heather Trammell. Heather is not only a CF mom but also a source of wisdom and support in our community. She did an amazing job organizing the Gala and has already committed to leading again in 2026. Heather and her husband Chris (who, fun fact, is now best friends with Joe Bonnell) bring so much heart to our mission.

We were also grateful to have Tara Fahrner with us. Tara is a CF mom to 2½-year-old Beau, who was diagnosed at birth through newborn screening. Tara describes the diagnosis as a shock, but she’s thankful for the strong CF community that has surrounded her family. She and Heather both serve on the Quality Improvement Team at the University of Michigan as well as our Advisory Board.

And a big shout-out to Dave Ingraham, who traveled three hours from Lake City, Michigan, to be at the Gala. Dave’s truck is wrapped with The Bonnell Foundation logo and QR code, and he drives it in parades to spread awareness. He’s fully embraced his granddaughter Briar Lynn’s journey with CF, supporting both her and his daughter, a single mom. His dedication is inspiring.

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Laura talks with Dr. Patrick Sosnay, Vice President and Head of CF Development at Vertex Pharmaceuticals. Before joining Vertex, Dr. Sosnay was a clinician and researcher at Johns Hopkins, where he helped define the genetic criteria for diagnosing CF and co-founded the influential CFTR2 database.

Dr. Sosnay brings his expertise, and a gift for explaining complex science.  He unpacks the real story behind sweat chloride testing. Together, we explore:

* What the sweat test actually measures — and how it connects to the CFTR protein.
* Why sweat chloride is still vital long after diagnosis.
* How researchers use it to track CF progression and measure treatment success.
* What all this means for people living with CF and their families today.

This episode redefines the sweat chloride test as more than just a diagnostic number, it’s a powerful marker of health, innovation, and hope for the future.

Listen now and gain a fresh perspective on one of the most familiar, yet evolving  parts of cystic fibrosis care.

(Vertex is a sponsor of this podcast. The Bonnell Foundation remains committed to transparent, balanced conversations that serve the CF community first.)

Additionaly we explore:

What the sweat test measures and how it’s tied to the CFTR protein (cystic fibrosis transmembrane conductance regulator).

Why sweat chloride remains important well beyond diagnosis.

How researchers use it to understand CF progression and evaluate new treatments.

What this means for families and patients living with CF every day.

This episode shares the reframing of the sweat chloride test, not as a simple number, but as a meaningful marker of health, research, and hope for the future.

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Today, as CEO of the Filotimo Foundation, Pete is redefining what it means to thrive with an invisible illness and helping others find strength in their own stories.

Pete is a tireless advocate for people living with cystic fibrosis. Diagnosed at birth, Pete has spent his life navigating the challenges of CF—while rewriting the narrative of what it means to truly thrive with a chronic, invisible illness.

Through the Filotimo Foundation, Pete has built a strong network of support for individuals and families—while breaking down the stigma surrounding conditions you can’t always see.

Whether you live with CF, love someone who does, or simply care about creating a more compassionate world, Pete’s story will inspire you.

To learn more about Pete's Foundation; https://filotimofoundation.org

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When Liam was diagnosed with cystic fibrosis (10 years ago) at just three weeks old, Deana’s world shifted overnight. What began as one mother’s fight for her child has grown into a movement empowering families, educators, and kids facing chronic illness, all through courage, creativity, and hope.

From bestselling advocacy workbooks to emotional wellness initiatives, Deana and Liam are transforming personal challenges into meaningful change. You’ll hear how storytelling became their most powerful tool, and why their message, hope is louder, is resonating far beyond the CF community.

In this episode, we talk about:

How The Ultimate CF Family Workbook came to life

The importance of storytelling in chronic illness

Their upcoming children's book and animated series, Liam’s Chronicles

How they’re changing the conversation around invisible illness

Learn more about their work or grab a workbook: [Insert Website or Linktree]
Available on Amazon + Etsy
Featured by hospitals like SickKids and CHEO

Connect with Deana & Liam:

FB: Facebook.com/liamsmission00

To order: www.liamsmission.ca 

IG: Instagram.com/liamsmission

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Heather grew up finding refuge in fantasy, books filled with dragons, magic, and faraway worlds. While CF demanded hours of treatment each day, her imagination offered something far more powerful: freedom.

 “Fantasy wasn’t just fun—it was survival. In worlds of dragons and magic, I could breathe easier.” — Heather Ashle

Now, with two English degrees from Oakland University, Heather continues crafting those very stories. She writes with the hope of giving others what fantasy once gave her: wonder, empathy, and a temporary escape from the weight of reality.

You can find Heather wherever imagination thrives—on the page, on stage, at Ren Fests, or in magical corners of our community like Witches' Bazaars. She is pure magic.

• Fantasy Author of the Realm Riders Series www.heatherashle.com
• For links to Heathers author social media and where her books are available: www.heatherashle.com/linktree 
• Publishing via HB Ink, LLC www.hbinkllc.com  
• And https://www.facebook.com/HBInkLLC/
• Also: https://www.instagram.com/hbinkpublisher/

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Trust me, you’re going to be inspired by this conversation.

To follow Jen: @jencantbreathe

COTA health fundraising campaign: https://cota.org/cotaforjenslungs/our-story/

The Sick Chick Hour: https://open.spotify.com/show/7eegd1SwLueAnrxueC7VVe

Youtube for Jen: https://youtube.com/@jencantbreathe?si=QXrvZniAYTwjmv2v  

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Takeaways

Advocacy is essential for the rare disease community.

Building connections provides vital support.

Patients should feel empowered to speak up for their health.

Collaboration with policymakers can drive positive change.

Storytelling inspires and unites the community.

Engagement raises awareness and strengthens support networks.

Advocacy days introduce rare disease issues to lawmakers.

Recognizing unique challenges leads to better understanding.

Coalitions amplify the collective voice of rare disease advocates.

Empowering patients and caregivers enhances quality of life.

About Leslie Baldwin
A Michigan native now living in Holt, Leslie is a rare disease advocate. She co-founding MI-RARE, a foundation uniting rare disease voices across Michigan, alongside Kayla Miller, Kathi Luis, Kortney Lee, Chris Draper, and Laura Bonnell.

Her advocacy experience is wide-ranging: she has worked with Autism Speaks, National Organization for Rare Disorders (NORD), The EveryLife Foundation, NIH, CMS, and the FDA. As Director of Strategic Advancement with Texas Rare Alliance, she helped pass key legislation that earned her national recognition as a finalist for the 2023 Rare Voice Award in State Advocacy.

On September 30th, MI-RARE will host the Michigan Rare Disease State Advocacy Day at the Capitol, a powerful opportunity for patients, families, and caregivers to share their stories with lawmakers and demonstrate that while each condition may be rare, together we are many.

To connect go to: MI-rare.org 

Register for Advocacy Day opens August 4th and ends September 12th, 2025.  There is a travel stipend too. Go to the MI-Rare website.

To connect with Leslie Baldwin: leslie@mi-rare.org

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Abbie Stockard, Miss America 2025, joins us to share her incredible journey, from Auburn University nursing student and Tiger Paws dancer to national advocate and role model. At just 22, Abbie has earned over $89,000 in scholarships through the Miss America Opportunity and is using her platform to promote pediatric health, women’s leadership, and awareness for cystic fibrosis (CF).

Inspired by her best friend Maddie, Abbie has raised over $200,000 for CF research and was honored as the Cystic Fibrosis Foundation’s “2024 Hero of Hope.” She also created High Five for Kids, a wellness program that empowers children—including those with chronic illnesses, to build healthy habits for life.

In this episode, Abbie talks about balancing school, service, and advocacy, and how she’s using her voice to drive real change in healthcare and beyond. Don’t miss this inspiring conversation with a young woman leading with heart, purpose, and unstoppable energy.

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That’s exactly what Dr. Chris Flask is working to make possible.

Dr. Flask is a Professor of Radiology, Biomedical Engineering, and Pediatrics at Case Western Reserve University and University Hospitals of Cleveland. He’s at the forefront of an exciting transformation in medical imaging, one that could change the way we care for children with rare genetic diseases like cystic fibrosis (CF) and polycystic kidney disease (PKD).

“Our goal is to turn imaging, instead of just image creation, into data,” says Dr. Flask. “We want to create numbers. So we can say, this is what’s going on in the lungs. And when we put these patients on modulator therapies, we can see a 10 percent improvement in their lung disease. And similar responses in the pancreas, the liver, and the gut. That’s our goal—quantifying it through this fingerprinting methodology.”

This approach, MRI fingerprinting, is a revolutionary leap forward. Developed over the past decade at Case Western’s MRI center, it’s fast, accurate, and most importantly for kids: it requires no sedation, no radiation, and no contrast agents. Each image slice takes just 15 seconds, making it safer and more accessible for the most vulnerable patients.

Dr. Flask’s work is supported by the NIH, the Cystic Fibrosis Foundation, and an extraordinary 42-year collaboration with Siemens MRI. Together, they’re paving the way for multi-center clinical trials using this technology to better understand disease progression and therapy outcomes.

This episode is all about the intersection of science, innovation, and compassion, and the powerful impact of data-driven care.

We’re honored to welcome Dr. Flask to the show, although he prefers we call him Chris. You won’t want to miss this deep dive into what’s next for pediatric imaging and precision medicine.

Share with anyone who’s passionate about medical innovation, pediatric health, or rare disease research.

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From the moment Julia Rae could speak, she was singing, and from the moment she could dream, she was already imagining a bigger stage. As her mother fondly recalls, at just two years old, Julia was watching Barney on TV and asked, “How do I get in there and do that with him?” That instinct, that pull toward performance, was never just about the spotlight. For Julia Rae, the stage became her sanctuary, and later, her platform for purpose.

Diagnosed with cystic fibrosis at birth, Julia’s life has never followed an easy script. But instead of letting a chronic illness limit her, she embraced the full range of her voice, as a singer, actress, writer, and advocate. She didn’t just want to perform; she wanted to make a difference.

At 16, Julia founded Singing at the Top of My Lungs, a nonprofit inspired by her own hospital experiences. Initially, the organization supported both CF research and creative therapies at children’s hospitals. But as larger institutions took a stronger lead in research, Julia saw a growing gap elsewhere.

“I’ve decided to devote all of Singing at the Top of My Lungs to music and creative art therapies... They are significantly underfunded, not covered by insurance, and they are often, honestly, the unsung heroes of children’s hospitals.”

Julia’s foundation now champions music and art therapies — the very programs that once transformed her own stays in sterile hospital rooms into spaces of joy and creativity. She knows firsthand that healing isn’t just about medicine — it’s also about expression, play, and being seen as more than your diagnosis.

Her own career blossomed when a YouTube performance caught the attention of a Beverly Hills record producer, leading to her single “Be That Girl” being featured in the film The Greening of Whitney Brown. She’s since performed the national anthem at major sports arenas, starred in national commercials, and most recently, in the 2024 film Playing Through. Her appearance on ABC’s Listen to Your Heart introduced her to a national audience, but she never let fame outshine her mission.

In parallel with her artistic pursuits, Julia has become a tireless advocate. She co-created and hosted Making It Matterwith the Boomer Esiason Foundation, currently leads Uncommon Lungs with Vertex Pharmaceuticals, and recently launched a podcast called A Deeper Look, spotlighting bold, thoughtful conversations with inspiring women.

Julia Rae is more than a performer, she’s a force. Her life is a testament to what happens when passion meets purpose, and when a voice refuses to be silenced by circumstance.

For the chronic illness community, and for anyone who’s ever been told “you can’t” — Julia’s story sings a different tune.

She’s not just making music. She’s making it matter.

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Please consider making a donation: https://thebonnellfoundation.org/donate/

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Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Despite a schedule packed with training, advocacy, and breaking world records, Sophie Holmes of the U.K. always makes time to share her story, and we’re so grateful she did.

Diagnosed with cystic fibrosis at just four months old, Sophie was told she might not live past her teens. But rather than letting that define her, she’s spent her life rewriting the narrative. Her latest, jaw-dropping accomplishment? Running 36 marathons in 36 days. That’s right—36 consecutive days, 26.2 miles each day, driven by pure determination and an unshakable belief in what’s possible.

Sophie is not only an elite athlete and personal trainer, she’s a powerful advocate for chronic illness awareness. In this episode of the Living with Cystic Fibrosis podcast, she talks about what fueled her through each grueling mile, how she manages the intense physical demands of endurance sports while living with CF.

“Mindset is everything.” – Sophie Holmes

It’s easy to say that exercise is one of the best things someone with CF can do. But Sophie reminds us: that doesn’t mean it’s easy. Her story is a powerful example of grit, strength, and living fully—even when the odds are stacked against you.

Sophie’s Story:

Diagnosed with cystic fibrosis at four months old

Told she might not live past her teenage years

Ran 36 marathons in 36 days, demonstrating her extraordinary endurance

Set a Lake Cuomo Ultra Ironman World Record

Believes mindset is the key to overcoming life’s toughest challenges

Works as a personal trainer and chronic illness advocate

Redefines resilience—not just surviving, but thriving

Inspires runners, athletes, and anyone living with chronic illness

Lives with relentless drive and purpose

Shows us what’s possible when you push beyond the limits others set for you

You can find Sophie Holmes on IG: https://www.instagram.com/sophiegraceholmes/

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Please consider making a donation: https://thebonnellfoundation.org/donate/

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Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

“It’s an honor to be an advocate,” says Laura Bonnell, founder of The Bonnell Foundation. “We are the government—people are. If we don’t fight for fair laws that help the people they’re meant to serve, who will?”

In this episode, Laura is joined by five passionate advocates—some seasoned, some new—who recently traveled to Washington, DC, to meet with lawmakers. Together, they share their personal experiences, insights on advocacy, and why storytelling and persistence matter in influencing policy.

The conversation highlights:

How to build relationships with legislative staff

The role of personal stories in driving change

The importance of staying organized and adaptable

Advice for those who can’t travel but still want to advocate

The emotional and rewarding aspects of standing up for what matters

Plus, we're joined by a lineup of experts working at the intersection of science, innovation, and policy:

Dr. Andy Kocab, VP of Research at ONL Therapeutics, shares how biotech is advancing treatments for retinal diseases. Contact: akocab@onltherapeutics.com

Harold Chase, Director of Government Affairs at NSF, discusses his journey from Senate staffer to global health policy leader. Contact: hchase@nsf.org

Thomas T. Moga, a veteran patent attorney and Fulbright Scholar, explains how intellectual property law impacts innovation. Contact: tmoga@dykema.com

Dr. Brandon McNaughton, CEO of Akadeum Life Sciences, offers insight on entrepreneurship, biotech breakthroughs, and customer-focused design. Contact: bhmcnaughton@gmail.com

Stephen Rapundalo, President of Michbio, reflects on bridging science, business, and public service. Contact: Stephen@michbio.org

This episode is a powerful reminder that advocacy takes many forms—and every voice matters.

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Mike Walters is a true pioneer in pharmaceutical business and innovation, with nearly four decades of experience. He began his career at Johnson & Johnson, where he spent 14 years in leadership roles across sales, marketing, and management development. In 1996, Mike launched his first company to help organizations navigate product commercialization in the U.S. Since then, his work in the CF space has been nothing short of groundbreaking. He founded and led Source CF, MVW Nutritionals, and CF Global Services, playing a key role in bringing many standard-of-care treatments to market. A Vanderbilt graduate with degrees in Biochemistry and Chemistry, Mike brings both scientific insight and a deep commitment to rare disease care.

Joining him is Jason Vandiver, Chief Operating Officer of MVW Nutritionals. A proud Alabama native, Jason earned his degree in Finance from the University of Alabama at Birmingham and spent 16 years in banking before joining MVW during a time of rapid growth. He now helps lead the multimillion-dollar, family-owned company that’s become a global leader in nutritional products for patients with CF and non-CF EPI.

In this episode, Mike and Jason share their personal stories, the importance of strong partnerships, and the real challenges patients and families are facing—especially as funding landscapes continue to shift. We explore the power of empathy, the strength of community support, and why transparency in nonprofit operations matters now more than ever.

It’s a conversation about hope, action, and what’s ahead as we work together to support those who need us most.

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

I’m delighted to share a conversation with Dr. MeiLan Han, one of the country’s most respected voices in lung health and a tireless advocate for people living with chronic respiratory conditions.

Dr. Han is a Professor of Medicine and Chief of Pulmonary and Critical Care at University of Michigan Health. She’s not only cared for patients at the bedside but has devoted her career to understanding lung disease at its roots, with a special focus on chronic obstructive pulmonary disease (COPD), a condition that remains widely under-recognized and underfunded. Through her research, Dr. Han is helping to uncover how diseases like COPD affect the lungs in different ways, with the goal of making treatment more precise, more effective, and more personalized.

Her journey began at the University of Washington and continued through specialized training at the University of Michigan, where she also earned a Master’s degree in Biostatistics and Clinical Study Design. Today, she leads research funded by the National Institutes of Health (NIH), serves on national advisory boards for the COPD Foundation and the American Lung Association, and contributes to global guidelines that shape how lung disease is diagnosed and treated.

Dr. Han also serves as Deputy Editor of the American Journal of Respiratory and Critical Care Medicine, helping to guide the direction of clinical practice and research in pulmonary medicine.

If you or someone you love is living with a chronic lung condition, Dr. Han’s insight is not only encouraging, it’s essential. I’m so grateful to bring her voice to this platform. How many breathes do we take in a lifetime? It’s fascinating to discuss and you’ll hear the answer in our podcast.

Lung health, do you think about it?

To get her book: https://www.amazon.com/Breathing-Lessons-Doctors-Guide-Health-ebook/dp/B08X2ZFGNZ/ref=tmm_kin_swatch_0

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Dr. Gabe Cohn is the Executive Director and Medical Director of the Rosenau Family Research Foundation. He stepped into the role in October, bringing with him over three decades of experience that spans academic medicine and the biotechnology industry. A licensed, board-certified Clinical Geneticist and Obstetrician-Gynecologist, Dr. Cohn has contributed to the development of multiple therapeutics aimed at treating rare genetic disorders—a career built on both clinical precision and compassionate innovation.

Beyond RFRF, he’s also the Chief Medical Officer at iECURE, Inc., a biotech company pioneering gene editing therapies for rare diseases. His prior leadership roles at Homology Medicines, AVROBIO, OvaScience, and Shire reflect a steady focus on advancing gene therapy and editing platforms. Since 2017 alone, he’s played a pivotal role in getting five different cell and gene therapy programs past the critical regulatory gatekeeping stages of IND and CTA submissions.

Dr. Cohn isn’t just a scientist—he’s a builder, a connector, and a relentless advocate for the potential of genetic medicine to rewrite the future for patients with rare diseases.

If you would like to get a hold of the Rosenau Foundation: https://rosenaufoundation.org

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

When I spotted a feature on podcasting in The Costco Connection, I was excited. When I saw Michelle Glogovac featured? I knew I had to reach out. That decision turned into one of the best moves I’ve made for growing my podcast.

Michelle,  THE Podcast Matchmaker®, publicist, and author of How To Get On Podcasts, shared simple, powerful strategies that helped expand my reach. One standout? Getting featured on other podcasts. It boosted my visibility, brought in new listeners, and gave me fresh insights into how other hosts run their shows.

In this episode, Michelle shares her approach to storytelling, visibility, and the importance of showing up. Her message: Your story is your superpower.

If you want to grow your platform and connect with more listeners, don’t miss this one.

“Your story is your superpower. The more you share it, the more people you help—and the more you grow in the process.”
— Michelle Glogovac,The Podcast Matchmaker®. 

Michelle is terrific and you will hear and relate to her infectious personality. You'll want to be her best friend!

Find out more or connect with Michelle:

Author: How To Get On Podcasts 

Podcast Host:  My Simplified Life

Founder and CEO: The MLG Collective

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

In this deeply moving live episode recorded at the Mix and Mingle Education Day, we brought together a powerful group of caregivers—grandparents, parents, stepparents, dads, and friends—for a heartfelt discussion about the emotional journey of caring for a loved one with cystic fibrosis.

What started as a simple idea to gather voices turned into our most beautiful and emotional podcast yet. There were tears, laughter, and unforgettable stories. We were honored to be joined by a Grief Counselor who helped guide us through the complex feelings that surfaced during our conversation.

This episode is a raw, real, and uplifting tribute to the strength, vulnerability, and love that caregivers bring to their roles every single day.

Join us for a conversation that honors the heart of caregiving and the power of community.

You’ll hear from:

(00:00:00) Laura Bonnell - Host - (Egypt, Foundation programs, legislation)

(00:16:49)  Lois Teicher - CF Grandmother (Laura’s Mom) 

(00:19:05)  Natalie Wicks Lois’s partner

(00:21:36) Julie Weatherhead - Grief Doula

(00:28:45)  Sharon Tischio - CF Mom

(00:33:08) Cambria Whitaker - CF Mom in a queer/transgender relationship

(00:38:55) Theresa Dagget, MSU Clinic, Respiratory Therapist, CF coordinator

(00:49:00 ) Dorothy Stratford,CF Family Caregiver

(00:52:15) Jillian Rogers Smith, 33 year old CF Patient and Dad, Bill Rogers 

(01:01:40) CF Mom to 6 year old daughter Louisa

(01:07:28) Wendi Tague (Nurse Coordinator) and Claire Haglund (Social Worker) 

Present but not on the microphone were Joe Bonnell (Laura’s husband), Jeannette Bovensie (Dorothy's Mom) and Dani Nettleton and daughter.

Claire Haglund: CHaglund@dmc.org

Wendi Tague: wtague@dmc.org

Lois Teicher (Laura's Mom): Loisteicher@yahoo.com

Natalie Wicks: Piccolo35@gmail.com

Theresa Daggett: daggett3@msu.edu

Cambria Whittaker: cambriawhitta@gmail.com

Dorothy Straford: dstrat701@gmail.com

Sharon Tischio: stischio@comcast.net

Jamie Rudnycky: jamie.rudnycky@gmail.com

Julie Weatherhead: weathervanecounseling@gmail.com

Jillian Smith, Jillian's Jay Walkers: jill@jilliansjaywalkers.org   

And Jillian's Dad, Bill Rogers

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

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Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

We also talk about The Bonnell Foundation fellowship program. A few years ago we started the program to encourage doctors to work in the specialty field of cystic fibrosis. Dr. Lumeng is one of the doctors who oversees this program.

Dr. Lumeng is the Frederick G.L. Huetwell Professor for the Cure and Prevention of Birth Defects and Professor in Pediatrics and Molecular and Integrative Physiology. Dr. Lumeng is the Division Chief of Pediatric Pulmonology at the C.S. Mott Children's Hospital and Associate Director of the Michigan MSTP Program.

He grew up in Indiana and graduated from Princeton University in Molecular Biology. He received his PhD in Human Genetics and MD from the University of Michigan and completed residency training in Pediatrics in the Boston Combined Pediatrics Residency Program at Boston Children’s Hospital and Boston Medical Center. He then completed fellowship training in Pediatric Pulmonology at the University of Michigan and started as faculty in 2006.  

He runs a research lab focused on the health effects of obesity and the links between metabolism and lung health. The laboratory participates in both basic science and translational research projects in adult and pediatric obesity. He is funded by the NIH and the CF Foundation for new projects studying the changing causes of diabetes in people with CF.

To contact the CF pediatric department (the Bonnell girls are pictured on this page): https://www.mottchildren.org/conditions-treatments/cystic-fibrosis-pediatric?pk_vid=6ff46bd2d38fe04c1739891353f5b28b

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

When Luanne McKinnon was diagnosed in 1969 at just 13 years old, doctors told her parents she might live to be 19 years old. Today, Luanne stands on the edge of her 70th birthday—a milestone that not only redefines possibility but embodies resilience, creativity, and purpose.

Born in Dallas, Texas in 1955, Luanne was diagnosed at a time when cystic fibrosis was still barely understood. No vests. No targeted medications. No community. And yet, she carved out a life of profound impact. “I stand as a witness to the possible.” says Luanne McKinnon

After earning a Master of Fine Art in Painting and a PhD in Art History, she launched a celebrated career in the visual arts—owning an art dealership in New York City, directing major university museums, publishing works, and curating over 35 exhibitions. She even became a Fellow at the prestigious Getty Research Institute.

And while that would be more than enough for most of us, Luanne continued to pour herself into advocacy—serving as Co-chair for Stanford’s Patient and Family Advisory Committee, raising awareness for CF patients before and after transplant. In 2011, she underwent a successful double-lung transplant at Stanford, and fourteen years later, she is still very much living proof.

This episode is not about her equally remarkable husband—EMMY award-winning filmmaker Daniel Reeve—though we’ll mention him later. This is about Luanne—her life, her art, her truth, and her refusal to let a diagnosis define the limits of her possibility. She says, “I stand as a witness to the possible.”
And after listening to this conversation, I think you’ll believe in the possible, too.

Welcome, to a very special episode of the Living with cystic fibrosis podcast and our incredible guest, Luanne McKinnon.

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

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Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

This episode now holds even deeper meaning. Jacob Venditti, who has since passed away from complications of cystic fibrosis (August 16th 2025), shares his story with a raw honesty that feels like a gift. He opens up about life with CF, the daily challenges he faced as he prepared for a lung transplant, and the vital role of community in carrying him forward. He speaks about the Live Fearlessly Foundation and the rare disease income threshold amendment he championed, work that reflected his relentless drive to create equity and hope for others.

Jacob also lights up when talking about his passion for the Crossing 4 CF, the ocean, and the healing power it brought him. Joined by his close friend Rob Brown, the conversation shifts to their 80-mile paddle race, a shared mission to raise awareness for cystic fibrosis. Their bond—rooted in surfing, resilience, and love for life, shines through in every word.

Listening back now, Jacob’s courage, humor, and hope feel even more profound. This conversation is a reminder of the extraordinary way he lived, loved, and inspired. Jacob paddled fearlessly, and his spirit continues to ripple across the CF community and beyond.

To connect with Jacob and his team: https://livefearlesslyfoundation.com 

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

When our daughters first received their vest machines, they felt like they weighed a hundred pounds and had to be plugged into the wall. The vests didn’t fit well—riding high in the armpits and leaving much to be desired in comfort and function. Fast forward 25 years, and everything has changed.

In this episode, Laura talks with Nicole Dunn, Senior Market Development and Education Manager at Tactile Medicaland an expert on the AffloVest. With a strong background as a registered respiratory therapist and a deep passion for respiratory education, Nicole is at the forefront of innovation in airway clearance therapy.

Together, they dive into the evolution of the AffloVest—from its design improvements to the company's mission to provide accessible, life-changing therapy for people with chronic respiratory diseases like cystic fibrosis. Nicole shares how patient feedback has shaped product development, the impact of CF modulators on airway clearance, and how community engagement plays a vital role in Tactile Medical’s approach.

This episode is full of inspiration, real-life success stories, and a look at how far we’ve come in improving comfort, mobility, and quality of life for people with CF.

To learn more about Tactile Medical please visit:  https://tactilemedical.com

To learn more about AffloVest:  https://affloVest.com

For questions: afflovestinfo@tactilemedical.com

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

We met after Siri took on her role with the Cystic Fibrosis Research Institute. I consider Siri a dear friend, and a mentor.  Siri is truly among the smartest people I know.  She is an advocate for her daughter Tess, who has CF,  and is an incredible advocate for the CF community.  If you need legislation explained to you, Siri can help you. She can put it in a way you'd understand.

In this insightful conversation, we explore the evolving landscape of the Cystic Fibrosis (CF) community. We share personal updates and discuss key advancements in treatment, while also addressing ongoing challenges faced by patients and families. Topics include the emotional weight of age milestones for those with CF, collaborative organizational support, and critical legislative issues impacting the rare disease community. The episode also delves into the growing cancer risks in CF, the importance of regular screenings, and the difficulties patients face with insurance coverage. Emphasizing the vital role of the Cystic Fibrosis Research Institute (CFRI), they highlight its efforts in advocacy, education, and psychosocial care. The discussion calls for increased participation in clinical trials, better funding for rare disease research, and greater awareness of diversity and the implications of late CF diagnoses.

"The CF fight is far from over. From cancer risks to access to care, this conversation is everything." Siri Vaeth.

To learn more about CFRI: https://www.cfri.org

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

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Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Aaron has CF, he is post-transplant, he started a recording label, he plays the piano and wraps, And he worked with the man known as the Lion of Zimbabwe. And he’s going to law school in the Fall.

We have a lot to talk about!  

To get in touch with Aaron:

https://aarontrumm.com

A music production education brand:

https://recordinglikemacgyver.com 

This site Aaron says is disappearing soon! https://nquit.com 

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In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob shares his personal experiences as a caregiver and advocate, emphasizing the need for continued support and education in the medical community. The conversation highlights the emotional rollercoaster of living with a chronic illness and the hope brought by new therapies. In this conversation, Bob Coughlin shares his emotional journey as a parent of a child with cystic fibrosis, detailing the transformative impact of new treatments and the importance of community support. He discusses the hope brought by advancements in gene therapy and the future of cystic fibrosis treatment, emphasizing the need for continued advocacy and innovation in healthcare. The conversation highlights the emotional highs and lows experienced by families dealing with chronic illness and the importance of maintaining a positive outlook.

Bob aligns real estate strategies with scientific business objectives. Which is very cool if you ask me. He’s on numerous boards and is extremely involved in work, life and organizations.

___________________________

Bob Coughlin is a Managing Director at JLL and is the New England’s Life Science and Healthcare Practice Group lead. He specializes in the representation of lab, GMP manufacturing and technology space. Robert delivers creative solutions that align real estate strategies with scientific business objectives. 

Experience

Robert most recently operated as the President & CEO of the Massachusetts Biotechnology Council, where his mission was to advance Massachusetts's leadership in the life sciences to grow the industry. Robert has spent his career in both the public and private sectors. Before joining MassBio, he served as the Undersecretary of Economic Development within Governor Deval Patrick’s administration, where he prioritized both healthcare and economic development issues and was a strong advocate for the life sciences industry in Massachusetts. Prior to that, he was elected as State Representative to the 11th Norfolk district for three terms. Robert has also held senior executive positions in the environmental services, capital management and venture capital industries.

Board Involvement

• Franciscan Children’s Hospital, Vice Chair, Board of Trustees
• Team Impact,  Member of National Board of Directors
• MassBio, Member, Board of Directors
• BA Sciences, Member, Board of Directors
• Anagram, Member, Board of Directors
• Nuvara, Member, Board of Directors
• Cystic Fibrosis Foundation, Chair, MA/RI Board of Directors
• Schwartz Center for Compassionate Care, Lifetime Board Member

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Michaels dad, Tom was on our Board of Directors for many years…and I was lucky to see him just the other day.

Thanks for sharing your story Michael.

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Peggy talks about the toll waiting for a transplant takes on a family.  One of the issues was that one of them always had to work, in this case it was her husband, so she stayed with Stephen. 

Peggy and her husband are the parents of three men. She lives in South Carolina  now but was born and raised in Detroit. Peggy worked as a nurse for 43 years (not in CF).

Their oldest son Chris is 37 and their youngest is 31 years old. Stephen who died from complications of CF was the middle child. He died at 29 years old. 

To get in touch with Peggy you can email her here: stephen65roses@aol.com

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Amanda Boone I would say is a rock star advocate in the CF and rare disease community.  She has cystic fibrosis and lives in Colorado.  She truly rose to what I consider fame in the rare community when the Prescription Drug Affordability Drug (PDAB) was introduced in her state.

We're going to talk about the PDAB and all sorts of legislation the Amanda is fighting for, and how it impacts you.

Amanda Boone is an advocate who lives with Cystic Fibrosis (CF), a chronic and fatal chronic illness. Prior to 2019 Amanda’s health was declining. Then Trikafta, a CF modulator drug was approved by the FDA. This groundbreaking drug gave Amanda her life back and kept her from needing a lung transplantation. Amanda lost many friends over the years to CF and she carries a profound sense of gratitude for every additional day she lives.   

Amanda co-founded CF United, a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Every member is either a patient or caregiver. Prior to CF United, Amanda served on the advocacy board Dell Children's Medical Center in Austin Texas and volunteered with the CF Foundation.

When Trikafta faced affordability challenges through the Prescription Drug Affordability Board (PDAB) in Colorado, CF United emerged as strong advocates, successfully influencing decisions to maintain accessibility. CF United's advocacy goes beyond preserving access; they champion "The Independent Patient Voice." Amanda is committed to ensuring that all patients have access to the treatments they need, and that they get a seat at the table regarding decisions that affect their lives. 

In addition to advocacy, Amanda finds solace in her Colorado ranch with her husband son, two dogs and two horses. Amanda copes with her disease with laughter and realism.

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Shawna Gray is the director of Operations and Programs, and we are happy to have her. She is also the director of the Big Peach Sizzler 10K/5K Race Director.  This is BreatheStrong CF’s annual Big Peach Sizzler 10K & 5K. She has been working to support the CF community since 2022 when she joined the Miles for Cystic Fibrosis team as the Development Director. Shawna’s nonprofit engagement began in college through volunteerism and logically progressed into her professional career. 
Outside of work, Shawna enjoys being present for her family (husband, 2 stepchildren, and rescue dog).

To find out more visit the BreatheStrong CF web site: https://breathestrongcf.org

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Heather Carmona, the Managing Director (and co-founder) of NonProfit Spot is a great friend and I am honored to share all that she does. Heather and I have known each other for about 20 years, which seems impossible. Time does fly as they say.  Heather's husband Scott has CF.  Scott helped build  The Bonnell Foundation from the beginning as he was one of the Board of Directors.

Heather brings more than 25 years’ experience working throughout the public-private, philanthropic and nonprofit sector.  She’s held executive-level positions as both Chief Administrative Officer and Executive Director and is well versed in economic and community development, education, government, social impact, and health and human services organizations. Heather oversees and supports the core branch teams with all aspects of client engagement and service delivery.

If you have a nonprofit, or want to learn more about running a nonprofit, this could be the place for you.  They have classes and resources, along with a free newsletter that anyone can access. It’s also full of local jobs if you’re searching for a nonprofit job.

NPS is a women-owned and women-led LLC founded with one goal in mind to assist small to mid-sized nonprofits with fund development, governance,operations and management services. With more than 80 years of combined service our core team is based in metro-Detroit and has spent their professional and personal lives in service to the community. Since 2013, we have amassed a client roster of more than 100+ organizations ranging from small and emerging organizations with budgets under $100,000 to large regional and national nonprofits with budgets ranging upwards of $30 million. The average client we serve has an annual budget of between one and $5 million.

NPS: https://nonprofitspot.com

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The organization address challenges faced by rare disease patients of color.  They bring together rare disease experts, health and diversity experts.

Their Vision: a world without health disparities in rare disease patients’ communities.

Mission: to address the extraordinary challenges face by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH). Jenifer volunteers as the Professional Development Director of the National Association of Asian American Professionals (NAAAP) of Colorado.

Find more here: Rarediseasediversity.org

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Since the planning stages of Claire’s Place Foundation, Melissa has spent countless hours working for the cause and, of course, raising her two children, Claire (the foundation’s namesake) and Ellie.  With many years’ experience in project management and event planning, she has the drive and the experience needed to get the foundation off the ground as well as the personal history of raising a child with cystic fibrosis.  Melissa is also a strong supporter of many charities and fundraising activities in her community, mostly related to causes that support families and children living with this and other rare diseases.

Founding Claire’s Place Foundation has been a way for Melissa to give back and share her experience with other families living with cystic fibrosis.  “We have always been blessed with a supportive family and a wonderful group of friends.  It is my hope that we can provide the same type of support to families walking this path alone.  It definitely takes a village or in this case a foundation to raise a child with a chronic, life threatening disease like cystic fibrosis”

To learn more about Claire's Place Foundation visit: https://clairesplacefoundation.org

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A lot of laughs on this podcast with my friend Emily!  She talks about her health, the Foundation, new and old legislation and what's coming up in 2025!

Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation in 2007 to heighten public awareness and raise funds to increase the quality of life for everyone with CF. Emily created and manages an internationally acclaimed line of merchandise to help fulfill the mission of Rock CF. Today, Emily’s battle against this deadly genetic disease is printed in Runner’s World, FORBES, The Atlantic and SPIN magazines, the New York Times, The Washington Post, USA Today, NPR and posted on Competitor.com, Shape.com, the Associated Press, and various cystic fibrosis focused educational websites. She is a marathon running, super teacher and a speaker, addressing parents, patients and audiences about the effects of cystic fibrosis and the ever changing and improving treatments being made. Through Emily’s humor and personal experience, she inspires the masses to transform their lives with exercise, diet and goal setting.

To get in touch with Rock CF: https://letsrockcf.org/rock-cf-half

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If, like me, you have not heard about Charity Care or Dollar For, I am glad you're here!  This podcast will tell you about both Charity Care and the nonprofit, Dollar For.  I learned about the program during a webinar by Patients Rising.

You'll learn more about your rights regarding healthcare, and about the help that's out there.

If you’re overwhelmed with medical bills, confused by insurance, your rights and about getting help, this podcast will be a wonderful education. 

Eli Rushbanks is an attorney who works at the intersection of medical debt and consumer protection. He currently is the General Counsel and Director of Policy & Advocacy at Dollar For, a patient advocacy non-profit that helps patients apply for hospital financial assistance. In that capacity he works with patients, advocacy groups, lawyers, state and federal regulators, and hospital leaders to improve patient access to and experience with financial assistance. He helped build Dollar For from the ground up which, so far, has helped relieve over $60 million in debt for nearly 20,000 patients. 

His work has been featured in publications such as the New York Times, Wall Street Journal, and NPR. His reports on charity care policy have been cited by the CFPB and have been the basis for class action lawsuits for charity care violations. Eli says, "Fourteen percent of people who applied to a hospital for Charity Care, never heard back from the hospital.  There is not uniformity on how these programs are run." 

Terry Wilcox is the Chief Mission Officer with Patients Rising. Terry says that 340B sounds like a tax form, not something that patients know about. It’s not just to help patients, it’s to help hospitals too. But there has been some misuse of the program, “Expanded from 4 billion between 2000 and 2009, then the A.C.A codified the fact that they could expand, it ballooned to 66 billion dollars. And hospitals now have beautiful wings in their hospitals.”

The 340B Drug Pricing program was implemented by Congress in 1992 and it allows hospitals to purchase drugs at significant discounts to serve vulnerable populations. The program was originally added so that hospitals could treat underserved communities and help them stretch their resources.

To learn more about Dollar For: https://dollarfor.org

To learn more about Patients Rising: https://www.patientsrising.org/event/midday-masterclass-340b-in-focus-history-impacts-and-state-level-realities/

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As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old.  Beth is a huge advocate in Canada, and much of the progress made in the rare disease space is thanks to her efforts.

Laura Bonnell and Beth Vanstone have been advocating a total of more than 50 years combined, and they're not done yet. They need your help, on any scale that works for you (small or large).

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Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey.  She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthiest life.  She focuses on people diagnosed with cancer and rare disorders. 

Dr. Borrelli  has worked in healthcare for over 25 years. Apart from her experiences in professional practice, she has encountered frustration and discrepancies while personally navigating the healthcare system. She has been the provider, the patient, the daughter, the sister, and the parent facing the overwhelming healthcare system; and left feeling alone and confused. 

Her passion is to help patients navigate the chaotic healthcare system. No one should have to do it alone. 

Getting a second opinion is often a good idea or enrolling in a clinical trial. Dr. Borelli research best management options for undiagnosed or chronic disease patients, as well related insurance/billing issues. Which we can all relate to!

Dr. Borelli can also assist if you’re admitted to a hospital or rehab facility, and she communicates with the healthcare team and helps reduce medical errors. 

How to get a hold of Dr. Borelli: advocate@pathwaypa.com

To hear her podcasts: https://pathwaypa.com/podcast/ 

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His second transplant was in NYC and Dylan talks about what it was like to go back to the streets he could barely walk, pre-transplant. It so touching as Dylan chairs his story with us. I appreciate all the ways Dylan continues to inspire our CF Community.  Our last question is: will he do another one? What do you think he might say? Also, I bet we might see some of his well-known glittery artwork featuring some running in the future. We can only hope!

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Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is the Deputy Director.  Sara, an attorney, joined PIPC in 2011 and serves at the firm, Thom Run Partners.  Sara focuses policies to advance a patient centered health system, from patient engagement in research to driving outcomes that matter to patients in healthcare payment and delivery.  Sara is a healthcare and welfare policy expert with over 25 years of experience, beginning her career on Capitol Hill working for former Senator John Breaux (D-LA) from 1996-2003, and later as an attorney at the law firm Patton Boggs.  Thayer joined PIPC in 2019. Thayer works with PIPC’s diverse membership of patients, healthcare providers, researchers, and other groups to ensure that patient centricity is at the core of the nation’s health care system.  Thayer has expertise in health care value assessments and their implications on patients and people with disabilities and continues to engage in this topic both at the Federal and State level. 

Chair of PIPC: (From their website) Tony Coelho is a former United States congressman from California, and primary author and sponsor of the Americans with Disabilities Act. Tony was elected to Congress in 1978 and served for six terms until 1989. He served on the Agriculture, Interior, Veterans Affairs, and Administration Committees during his tenure, specializing in disabled rights. In 1986, Tony was elected House Majority Whip. As the chief vote counter for his party, Tony oversaw a series of Democratic victories in the House on measures ranging from the budget to cutting off funds for the war in Central America. Tony was the original author of the Americans with Disabilities Act, signed into law by President George H.W. Bush. By 1994, the U.S. Census Bureau reported that some 800,000 more people with severe disabilities had found employment than were employed when the bill was first enacted. Tony currently serves as the DNC Disability Council Chair, seeking to ensure that the political process is accessible to people with disabilities. President Bill Clinton appointed Tony to serve as Chairman of the President’s Committee on Employment of People with Disabilities, a position he held from 1994 to 2001. He also served as Vice Chair of the National Task Force on Employment of Adults with Disabilities. In 1998, Clinton appointed Tony as the United States Commissioner General at the 1998 World Expo in Portugal. Clinton also appointed Tony as Co-Chair to the U.S. Census Monitoring Board, a position he held until his appointment as general chairman of the Gore presidential campaign.

Sara and PIPC work with nonprofit organizations, like The Bonnell Foundation to help us to understand and keep track of all the legislation on the books, and coming down the pipeline. 

To contact PIPC go to: https://www.pipcpatients.org

To find PIPC on social media check them out at: @PIPCpatients (on twitter and LinkedIn)

Another resource Sara and Thayer suggest: https://www.patientaccessproject.org

Acronym's used during this podcast: 

Prescription Drug Affordability Board (PDAB)

Rare Disease Advisory Council (RDAC)

National Association for State Health Policy (NASHP)

Institute for Economic and Clinical Review (ICER)

Equal Value of Life Year Gained (EVLYG)

HR 485 Protecting Healthcare for all Patients Act   Read it here: https://www.congress.gov/bill/118th-congress/house-bill/485

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In 2019 Heather became a member of the family advisory board at C.S.Motts Children’s Hospital in Ann Arbor, and is a Parent Family Partner through the CFLN with the CF clinic at Motts for just over a year.

Heather is also a mentor in The Bonnell Foundation's Hand in Hand mentoring program.  Heather and her husband Christopher recently spoke at The Bonnell Foundation Night of Hope Gala.  We were lucky to have them!

Heather on FB: https://www.facebook.com/share/xkiJ9yoitqvTUEsV/?mibextid=LQQJ4d

Heather on IG:  https://www.instagram.com/heather61811/profilecard/?igsh=MWxwOTR5d3N0dHh1OQ==

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Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American’s thinking that medically everything is better in Canada, but that’s not true. Many countries around the globe are struggling with the high cost of drugs for Rare Diseases, Canada is no exception. However, while we see industrialized countries around world looking at solutions to get rare therapies to patients quickly in an effort to maintain, improve and save lives, Canada remains stuck relying on a drug system designed to handle aspirin. Canada is the only country in the G7 without a national approach to rare diseases.

In February 2023 the Federal government announced a Rare Disease Drug Strategy with a 1.4 billion budget over three yrs to support it. The expectation was that drugs for rare diseases would have a quicker pathway and that it would address the specific challenges of the rare community and fill some of the many gaps to access. Sadly, that has not been the case thus far. 

Beth says, “There are a lot of challenges for patients, it’s very timely, there are a lot of gaps that will potentially harm patients.”  Touraj is one of the patients falling through the gaps.

Touraj says his FEV1 is 35 percent, which means he is potentially looking at a double lung transplant. “It is shocking that in the next two to three years I might be getting to the point of needing a transplant. We’re sad about it. My girlfriend is sadder about it than I am right now. I think of it as more of a reality.”  The hope would be access to a drug, despite his rare mutation, but the ability to try it.

To connect with Touraj

Instagram: https://www.instagram.com/tojyla/

Facebook: https://www.facebook.com/touraj.dehghan/

Linkedin:  https://www.linkedin.com/in/touraj-manshadi

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Atef Choudhury and Naim Mashni are incredible people and students. They're both Seniors at Lyman Briggs College -- majoring in Human Biology. They're minor is in business and they're on the pre- med track. Atef and Naim are the co-founders and Co-Presidents of Cure Found MSU . 

Atef's connection to CF is his nephew. He was born with the disease in 2017. Watching his nephew grow up with CF, seeing him do treatments, it inspired him to become a doctor. His passion for making a difference in the CF world Brought him to creating, with Naim, Cure Found MSU.  The Bonnell Foundation is very lucky because Cure Found MSU continues to raise funds for our non profit.

You’re going to meet Bhumika Kale too. She’s the University of Michigan, where she is a sophomore pursuing a major in Public Health while following the pre-medical track. As the Co-President of the University’s chapter of Cure Found, a club dedicated to raising awareness and support for Cystic Fibrosis patients.

Her journey into the medical field began in high school, where she actively participated in various pre-med clubs and volunteered in healthcare settings. This hands-on experience, along with a year of working as a medical assistant, solidified her desire to pursue a career in medicine. 

To get a hold of either of these organizations reach out here: 

https://curefoundmsu.org

Atef Choudhury, Cure Found MSU: atefc@msu.edu

Naim Mashni, Cure Found MSU: mashnin1@msu.edu

Bhumika Kale, Cure Found UM: curefound@umich.edu 

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The Bonnell Foundation: Living with cystic fibrosis is 14 years old. "I was so hopeful all those years ago, that my Foundation would take off,  and now look at it!  We have helped CF families from Michigan to California with financial assistance, lung transplant grants and Education Scholarships. Our programs have also grown, with more on the way.  We're so glad you're a part of it".

To reach Laura: thebonnellfoundation.org

Or follow us on social media (see below)

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Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her Grandmother, her legal guardian raised Sorcha and was her rock. 

Then, after her grandmother died, she struggled. Sorcha started using drugs to numb herself from the struggles of her physical and mental illnesses. This went on for about two years.

Then she focused on getting healthy. Today, she relies on movement, nutrition, and self-care to stay present and optimize her quality of life. She’s passionate about raising awareness about addiction and holistic treatment of health of wellness among the chronic illness community. She is also a certified health and wellness coach. Sorcha works with an organization called, Face it Together. A nonprofit that helps others impacted by addiction to get well. 

To find out more about what Sorcha does, check out this website: https://www.wefaceittogether.org/

Sorcha's Instagram @sorchamtnmary

Business FB: https://www.facebook.com/wefaceittogether

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I learned about Rick, from my brother.  My nephews Colton and Caden had a rare disease called Chronic Granulomatous Disease (CGD). CGD is passed down through the mother, only to sons, not daughters. CGD causes frequent and life-threatening infections because their immune system can’t fight off certain harmful bacteria and fungi. My nephew’s mother is the carrier. Women do are only carriers of the genetic disease, only boys have the genetic diesase. The great news: there is a cure. Both my nephews were cured. 

About my brother and nephew. Noah works for Abbott Laboratories as a district manager across several states and has three kids, and a stepson wife his wife Lisa. My nephew Colton is a Patient Care Coordinator at a specialty Pharmacy in Detroit. Colton is an advocate for his disease and the rare community.

This is a reminder that it’s good to share information because after my brother told me about COTA, I connected with Rick at COTA.  The Bonnell Foundation and COTA are now partners helping people who need funds for transplants, and all that it entails.

Colton will be post transplant for three years on September 3rd, 2021

Caden will be post transplant on December 16th, 2022

To connect with Colton: coltonteicher@yahoo.com

To connect with Noah: noahteicher@yahoo.com

For information about COTA:  https://cota.org/get-started/ 

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Diane Shader Smith  is now releasing a second book on behalf of her daughter, "Diary of a dying Girl".  

The title honestly may sound depressing, but as Diane explains, it is a wakeup call about our public health crisis and is an empowering story. Mallory's writing is so beautiful. And I can tell you, you won't be sad reading her book, you'll be inspired. In this podcast Diane explains that it's our job to raise awareness about Phage Therapy, and about the dangers of antimicrobial resistance (AMR). Something that everyone should become educated about, whether CF is your disease space, or not.

You can buy Mallory's book here:  https://diaryofadyinggirl.com    All the money goes to AMR research through Mallory’s Legacy Fund. 

You can also sign up, and tell your story at the Global AMR Diary: https://www.globalamrdiary.org

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The program has a lot of benefits. CSHCS covers transportation that can include airfare and/or lodging for conferences relate3d to your child's condition. Children Special Health Care Services has been around for almost 100 years.

Danielle Pitchford, with CSHCS is explains the program to us in great detail. Pitchford is the Outreach and Engagement Analyst and oversees promoting CSHCS services and resources while engaging with providers. She also works with other professionals who work with the target population, as well as families of children with special health care needs.  

To be transparent, Laura sits on the Michigan BioTrust for Health Community Values Advisory Board, which is part of MI DHHS. She also sits on a Family to Family volunteer group.  And, her daughters benefited from CSHCS until they moved out of state.

CSHCS website: https://www.michigan.gov/mdhhs/assistance-programs/cshcs/general-information-for-families-about-cshcs

To learn more about CSHCS, take the free https://courses.mihealth.org/PUBLIC/home.html entitled "What is Children's Special Health Care Services." At this same site you will find another course entitled "CSHCS-Support Parent Training Course."

Call CSHCS Family Phone Line at  1-800-359-3722. 

Send an email to: cshcsfc@michigan.gov

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From his sisters Molly McBryan and Ame Austin:

"After an extremely long hard fought battle with cystic fibrosis, Matt McCloskey succumbed to this terrible disease on February 7th, 2024. He was a beloved husband, son, brother, uncle, and friend to many.   He will be remembered for a lot of things; one of which was his passion for the Take A Breather foundation in which he started.

The concept of Take A Breather started for Matt in 2012, when his own health battle with CF really took a turn. Knowing first hand what it is like to live with this disease, it was his dream and vision to offer families living with cystic fibrosis, a temporary escape, a breather, from the everyday struggles and emotional burdens of their disease. Matt put his heart and soul into this Foundation and is truly what drove him despite his own health issues.  Because of Matt, thousands of lives have been forever impacted due to his selflessness of wanting to bring joy to so many living with CF. He worked tirelessly and countless hours for the Take A Breather Foundation and the CF community.  Throughout the years, we heard from  many recipients/families the huge impact Matt’s mission had on their lives but we know there were countless others whom we did not hear from because he also worked quietly behind the scenes to motivate, answer questions, or just listen. There are no words to express the profound impact this loss will have on all those who knew and loved him and to the CF community."

This was written prior to his passing:

Matt and Jen have a great story to tell. 

Two people with CF, living their separate lives, and then they began working together to make a difference in the lives of people with CF.

Matt McCloskey was born in 1968 and grew up in Philadelphia, he has several other siblings, and one he never met because he died from CF at 2 months old.

In 2015 Matt received a lung transplant. Matt's in his 50's now, but his life expectancy was 6 years old.

He is currently running the Take A Breather Foundation.

Jen Bleecher, who is 52 years old, is the Community Outreach Volunteer for Take a Breather.  Jen is married, and has a 27-year-old daughter . Jen worked as a nurse for over 20 years. 

Jen had a double lung transplant, she has pivoted to volunteering some of her time helping with the Community Outreach initiatives, such as building relationships within the CF and broader communities, assisting in planning of fundraising events, and overseeing Take A Breather’s School Club program. 

To contact Matt and Jen: https://takeabreatherfromcf.org

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Bonnell Foundation email: thebonnellfoundation@gmail.com

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There is so little discussion and education about women and menopause in general. I recently listened to a podcast by Mel Robbins about menopause, and then saw menopause activist Ellen Dolgen on CBS News Sunday Morning, and reached out to her.

Dolgen is a best-selling author, speaker and Creator of Fearless Vagina - A Crash Course in Mastering Menopause. Her frankness in this podcast is delightful. It's All About Empowerment: My motto is: "Suffering in silence is OUT! Reaching out is IN!" Let's shatter the stigma surrounding menopause and support one another.

Sign up for: https://menopausecourse.ellendolgen.com

If you want to educate your employees, colleagues, or friends about menopause, look no further: https://ellendolgen.com/book-ellen/

Sign up for: https://ellendolgen.com/subscribe-to-ellens-news-flash/

IG: https://www.instagram.com/menopause_mondays/

FB: https://www.facebook.com/MenopauseMondays

Tik Tok: https://www.tiktok.com/@menopausemondays?

X: https://twitter.com/EllenDolgen

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Here are his stats: Caleb Bupp, MD, FACMG – Division Chief, Medical Genetics and Genomics.  Dr. Caleb Bupp is a pediatric trained, board-certified medical geneticist with Corewell Health Helen DeVos Children’s Hospital in Grand Rapids, Michigan. He serves as the Division Chief of Medical Genetics and Genomics.  He is also an assistant professor at Michigan State University.  

He co-discovered a treatable genetic syndrome caused by ODC1 mutations now termed Bachmann-Bupp syndrome and is the clinical director of the International Center for Polyamine Disorders.  This was recently recognized by the New York Intellectual Property Law Association as their ‘Inventor of the Year’ for his patent related to this condition.  He helped create and run Project Baby Deer, a statewide initiative to provide access to rapid whole genome sequencing which resulted in Michigan Medicaid being the first to create an approval and carve-out payment policy. Dr. Bupp helped form the Rare Disease Network which provides support and education throughout Michigan. 

Dr. Bupp received his Bachelor of Science in molecular biology from Grove City College in Grove City, Pennsylvania and his medical degree from the University of Toledo College of Medicine in Ohio.  He completed pediatrics residency at the University of Louisville in Kentucky and his medical genetics training at the Greenwood Genetic Center in South Carolina.

Cheers to science and innovation.

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Rowland received  access to a CF modulator after a battle with her insurance company.  Her son’s mutation is not on the FDA approved list for Trikafta…. even though there is proof that Trikafta will work on her son's mutation.

To follow Cambrey go to @cfadvocacy

You can email her: cambreywhite@gmail.com

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Brandi Berry, LLMSW is the Program Coordinator of the Kent County Children’s Special Health Care Services Program, Fetal Infant Mortality Review and the Healing Through Grieving: Pregnancy, Infant, Child Loss Program, all of the Kent County Health Department.   

Brandi has over 20 years' experience in the field of Child Welfare and Human Services.  She is also a Full Spectrum Doula and as well as an Adjunct Professor with the Grand Valley State University School of Social Work.  Brandi is the mother of three children, the oldest of which has rare disease, EOE.  She enjoys reading, traveling, and spending time with her children.   

To find out more about Children's Special Health Care Services program: https://www.michigan.gov/mdhhs/assistance-programs/cshcs/the-family-center-for-children-and-youth-with-special-health-care-needs-family-center

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Dr. Jena was born in a small town in Odisha, India. He got his love for science and medicine from his father and grandfather. He majored in Chemistry, Zoology, and Botany at BJB College in Bhubaneswar, Odisha, India,  He got his masters in zoology. He received the Peasant Ku. Memorial Prize and the Utkal University Gold Medal. He also got his doctorate in zoology (Molecular Endocrinology). His resume is lengthy and impressive. He was a fellow at Yale Univeristy of Medicine and worked as on the faculty there. He also worked in the Department of Physiology at Wayne State Univeristy. Dr. Jena was conferred the title of Distinguished Professor, and the George E. Palade University Professorship by the Board of Governors at Wayne State.

Dr. Jena is a cell biologist and chemist. He unraveled understanding of cell secretion with his pioneering discovery of the 'porosome', the secretory machinery in cells. 

This short bio doesn't even touch the surface of his contributions. To read more about him: https://static.s123-cdn-static- d.com/uploads/5744411/secure/normal_6539c9b2a5bef.pdf

HIs company website: https://www.porosome.com

A great porosome video, and a short one, explaining: https://www.youtube.com/watch?v=5y0Hset6gNw

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On Emily's team is Dr. Chandra Ghose, who is the Chief Scientific Officer. Dr. Ghose founded Bioharmony Therapeutics, an early stage biotech startup that specialized in the development of novel antimicrobials, to combat drug resistant bacterial infections.

Chandra spent 8 years at the Aaron Diamond AIDS Research Center where she focused her research on developing life saving vaccines in the laboratory of Dr. David Ho.  Chandra earned her PhD from New York University School of Medicine in microbiology and her bachelors degree from Saint Louis University in biology and theology, splitting her time between the U.S. and Spain campuses.

For more information about Emily's Entourage: https://www.emilysentourage.org

For registry information: https://www.emilysentourage.org/cystic-fibrosis-patient-registry/

For Emily's Entourage information: https://www.emilysentourage.org/eeupdates/ 

Follow EE at: @emilysentourage

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Dr. Drumm earned his doctoral degree while in a lab with Dr. Francis Collins, the former director of the NIH and at that time, in 1989 the pair co-discovered the gene that causes CF.

The discovery of the gene that causes CF was one of the biggest contributions to science, and even though science didn’t move as fast as we wanted in 1989 when this gene was discovered, it still moved pretty fast….look where we are today with a modulator drug that corrects the underlying condition of CF, and more possibilities in the pipeline.

Dr. Mitch Drumm is one of those scientific hero’s. He is currently a Professor in the Department of Genetics and Genome sciences, vice chair of translational research, director of the Research Institute for Children’s healh and is at the CF Clinic at Case Western Reserve University.

Because of the successes in cystic fibrosis, Dr. Drumm brought together faculty from across the Case Western Reserve University campus in 2015 to form The Research Institute for Children’s Health.  This institute was launched to implement laboratory-to-clinic research programs for other rare, genetic disorders, patterned after the CF approach.  Dr. Drumm currently serves as the Institute’s director, using it as infrastructure for rare disease research, but also as a platform for community outreach. 

His current research in CF focuses on gene editing approaches to therapy and he has active programs to understand altered metabolism in CF, problems of CF intestines, and how genes that modify CF disease severity convey their effects. 

Dr. Drumm also coordinates the Ohio Valley CF Consortium every year. 

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We welcome Dr. Ryan Hadley. Dr. Hadley is at Corewell health in Grand Rapids. He is an assistant Profession of Medicine in pulmonary and Critical care. He is a published author and researcher some of his academic appointments include Core Faculty with Pulmonary Critical Care Fellowship and MSU, assistant professor in the pulmonary and critical care.

His resume is beautifully long.  Here are some of his publications: “Acellular Normal and Fibrotic Human Lung Matrices as a Culture System for In Vitro Investigation” American Journal of Respiratory and Critical Care Medicine, Nov 1 2012, 186(9) 866-876.

• Adam J. Booth, Ryan Hadley, Ashley M. Cornett, Alyssa A. Dreffs, Stephanie A.

Matthes, Jessica L. Tsui, Kevin Weiss, Jeffery C. Horowitz, Vincent F. Fiore, 

Thomas H. Barker, Bethany B. Moore, Fernando J. Martinez, Laura E. Niklason, 

and Eric S. White

“Idiopathic Non-specific Interstitial Pneumonia” Respirology.  2016 Feb;21(2):259-68.

• Elizabeth Belloli, Rosemary Beckford, Ryan Hadley, Kevin Flaherty

“Critically Ill Patients with Interstitial Lung Disease” Clinics in Chest Medicine.  2015Sep;36(3):497-510.

• Ryan Hadley, Robert Hyzy

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Please join me with my friend Beth Vanstone who asks me all sorts of questions about what running a Foundation is all about!

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He is a deeply traditional and radically progressive advocate for trans rights and a vocal ally for LGBTQ inclusivity. 

Rabbi Moskowitz received three Ultra-Orthodox ordinations while learning in the Mir in Jerusalem and BMG in Lakewood, NJ. He is a Wexner Field Fellow, Senior Rabbinic Fellow at the Hartman Institute, and the author of Textual Activism, Graceful Masculinity, and Seasonal Resistance. His newest book, Covenantal Allyship, will be available this year. Rabbi Moskowitz’s writings can be found at www.rabbimikemoskowitz.com

We met in person at Temple shir Shalom in West Bloomfield. Rabbi Moskowitz was speaking at the synagogue and wishing to always be an ally for the Queer community, I went.

The CF community, every community has a queer population and that’s why I felt it was important to talk about this.

To reach Rabbi Mike Moskowitz www.cbst.org

To learn more about him and to order his books https://www.rabbimikemoskowitz.com

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And the food looks amazing there.

I have never been to Brazil, but Gabriel Johnson was born and raised there!  Gabriel is the Projects and Institutional Relations Coordinator at Unidos pela Vida - Brazilian Institute of Cystic Fibrosis Care, has worked for nonprofits for the last 8 years. 

He graduated in journalism and marketing.

Gabriel has MBAs in Digital Marketing and Project Management and is currently a master's student in Communication Sciences at the University of Porto, Portugal. 

Gabriel is a patient advocate for people with cystic fibrosis and rare diseases in Brazil. He’s been doing this for the past two years….and he’s only 31 years old!

To learn more about CF in Brazil visit the Unidos pela Vida website (Vernonica Stasiak's Organization and where Gabriel works). www.unidospelavida.org.br

Thank you to Beth Vanstone for producing this podcast. Beth is a CF advocate in Canada. Her daughter Madi has CF. She can be reached at: beth@thebonnellfoundation.org

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Dr. Machicado is a Clinical Assistant Professor in the Division of Gastroenterology and Hepatology at the University of Michigan. 

Dr. Machicado earned his medical degree from Universidad Peruana Cayetano Heredia in Lima, Peru, and received a Master of Public Health at Johns Hopkins Bloomberg School of Public Health. 

Dr. Machicado’s research focuses on epidemiology and clinical trials in pancreatic disorders. He has authored over 70 peer-reviewed articles, most of them on pancreatitis and pancreatic cysts. 

He has been recently selected as a FORWARD scholar by the American Gastroenterological Association, which aims to support physician scientists and future leaders in GI from under-represented populations. 

The Bonnell Foundation gave Dr. Machicado and his team a five thousand dollar grant to help study gut pain in people with CF. It’s a long pilot program, similar to a clinical trial. This is a feasibility study.

To get a hold of Dr. Machicado for this study: machicad@med.umich.edu

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 Years ago when she was working at IBM she was the Engineer of the Year, she was a multi-sport athlete and MVP of her basketball team.

Since then, Maureen has grown her personal brand and is an author.  Her first book, Destination Unstoppable is fabulous.  It teaches the reader how to be a successful team player.  As Maureen knows, as I have told her for years, if she could get in a room with the Detroit Lions, they would get to the Super Bowl, and win. 

Her next book Win like a Girl,  is where she talks about the framework needed to help coaches and parents develop powerful girls who overcome adversity and expand their comfort zone.  The book itself, and the message or powerful and empowering to everyone.

It relates to the CF world too.  As parents, and persons with CF, we must always advocate for ourselves, and the ones we love.

Meet Maureen Monte: https://maureenmonte.com/five-fears/

Coaching example, one on one: https://www.youtube.com/watch?v=hCu4-It9JFM

Follow Maureen on social media: https://twitter.com/maureenemonte

Facebook: https://www.facebook.com/profile.php?id=100004767524903

Linkedin: https://www.linkedin.com/in/maureenmonte/

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Aliyah earned her master's degree in social work at the University of Pennsylvania. She also got a bachelor's degree in Fine Arts in dance at Temple University.

Aliyah lives with her husband Mark and Mr. Boots (her polydactyl cat). They also have a Cavapoo dog named, Sammy.

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Vicky and her husband were devastated to learn that their son would not have access to the life-changing and life-saving drug Trikafta because he has two rare mutations. Due to small populations in rare mutations, clinical trials are often not feasible. Other countries are using in vitro data to provide access to those with rare and ultra-rare mutations while approximately 200 Canadians with CF are being left behind.

This is not a new problem in Canada, the pathway to access to new and innovative therapies is fraught with challenges. A broader regulatory approach is needed to support implementation of the National Strategy for Drugs for Rare Diseases, and cystic fibrosis is an example of this need. There are hundreds of disease-causing mutations, some with only a handful of patients worldwide. Health Canada can improve access to rare disease medications like Trikafta by using patient and laboratory in vitro data and by developing a regulatory model that permits bulk approvals of gene mutations that can respond to precision medicines like Trikafta.

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Dr. Josh Denny is the All of Us Research program, CEO. A program that comes from the National Institute of Health.  The Bonnell Foundation is all about Science and Innovation! And he has a CF connect via his father!

The goal of All of Us is to enroll 1 million people to build one of the most diverse health databases in history. This would allow resources to accelerate precision medicine for all populations.  This is critical to the future of our planet and population in my opinion…. but it’s clearly why they called the program: All of Us. To succeed, and to properly represent our population…science needs All of Us.

Josh is an amazing human, and I am honored to feature him in this podcast. 

Dr. Denny has been involved since the program’s inception. He was a member of the NIH Precision Medicine Initiative Working Group of the Advisory Committee to the Director, which developed the program’s initial scientific blueprint. He then led the program’s initial prototyping project and the All of Us Data and Research Center. Josh was named CEO of All of Us in January 2020. 

Before joining NIH, Dr. Denny was a practicing physician and held several leadership positions at Vanderbilt University Medical Center. At Vanderbilt, he led discovery and implementation projects in precision medicine, including clinical pharma-co-genomics and Vanderbilt’s DNA biobank. 

Dr. Denny was a pioneer in the use of electronic health records for genomics studies, including the initial descriptions of phenome‐wide association studies and phenotype risk scores.

To get involved with All of Us, visit this website:  https://www.joinallofus.org/

As I state in the podcast, I joined All Of Us, given over my genetic material and answers to medical questions.

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Part of the Bonnell mission, while doing these podcasts, is to raise awareness and shine the light on other Foundations who are also doing great things.  Today we’re going to tell you about the CF Trust in the United Kingdom.

Belinda Cupid is the Senior Impact Adviser at Cystic Fibrosis Trust. For the past six years she has been a member of the research team at Cystic Fibrosis Trust, their work is making a big difference to people with CF and their loved ones

Belinda works with colleagues to explain research grants, to bring to life progress made and put cystic fibrosis research news in context. 

Belinda does a lot. She collects, analyses, and interprets information on the impact of CF Trust-funded research. Her hard work helps Cystic Fibrosis Trust evaluate the outcomes of their funding and helps generate income to continue to fund cystic fibrosis research into the future. 

Belinda completed her PhD in biological chemistry, she has spent the last 20 years working in medical research charities, supporting, and communicating research into motor neuron disease and cystic fibrosis.

She’s doing some pretty amazing work as you'll hear.

Contact Cystic Fibrosis Trust U.K. https://www.cysticfibrosis.org.uk

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Please like, subscribe, and comment on our podcasts!

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The reason for this podcast is because, is that the program has opened up.  But not everyone knows it’s back open to people with CF.

To find out more about Healthwel Foundationl: https://www.healthwellfoundation.org

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What a treat for all of us today.  Nicholas Kelly is in the house. I've wanted him on our podcast for a while.  

Nick was diagnosed with CF when he was 3 months old.

Nick has so many accomplishments.  He earned a bachelor’s and master’s degree from Bowling Green State University. Nick is a dietitian. 

But that is not all, he is an author, dancer, and a speaker. Once you start watching his videos you won’t be able to stop. Trust is something you must start from within, to trust externally. First trust yourself.

Nicholas has done Ted X talks…Healing through the Human Experience. He also does motivational videos where he talks about fearing the truth.

Everything Nicholas talks about is not CF, it’s about life.  Did CF play a part in his internal strength, lets find out….

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Karen also has a younger daughter, Madison who does not have a rare disease.

Karen is a strong person sharing her story, and the challenging journey she’s been on with her daughter.

How did we meet? My brother’s wife, Lisa connected us. We were both advocating and Lisa Teicher thought we would enjoy having out. We met in a Starbucks the first time and didn’t stop talking. Moms who have kids with a chronic illness have so much in common. We bonded over chronic illness. 

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Rena is motivated by her personal and avoidable situation to raise awareness so others don't go through what she did.

Their experience with diagnosis of CF is sadly still too common. Between 2001 and 2005 they tried to figure out what health condition their son had. They were accused of not feeding him or caring for him properly prior to his diagnosed.

Rena is speaking out for black, indigenous and people of color or BIOPIC.

To get in contact with Rena: twosaltyokes@gmail.com

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Please like, subscribe, and comment on our podcasts!

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Dr. McColley's biography:

Susanna A. McColley, MD, FAAP, ATSF is a pediatric pulmonologist whose research focuses on improving the health of people with cystic fibrosis though understanding health disparities, improving methods for screening and diagnosis, and testing new treatments. She leads a multidisciplinary team of clinicians, community members and public health professionals to improving timeliness and equity of CF newborn screening. She is passionate about supporting the next generation of researchers, especially those underrepresented in the biomedical research workforce. She directs a summer research program for students from minority-serving institutions in Chicago and co-leads the Faculty Development Core for Northwestern University Recruitment to Transform Under-Representation and achieve Equity (NURTURE), the Northwestern University Faculty Institutional Recruitment for Sustaining Transformation program through the NIH Common Fund. 

Dr. McColley is Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago; Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine; Associate Clinical Director for Child Health and Director of the TL1 Multidisciplinary Program in Child and Adolescent Health at Northwestern University Clinical and Translational Sciences Institute; and Editor-in-Chief for Pediatric Pulmonology. Her research is funded by the Cystic Fibrosis Foundation, the National Institutes of Health, the Center for Disease Control and Prevention, and The Legacy of Angels Foundation.

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Caroline talks all things CF.  As someone with CF she knows what she’s talking about.  She’ll even discuss End of Life with CF families. Caroline volunteers for CF Ireland.

Caroline,  is 53 years old, and pushes the power of exercise. She’s a cycler, she’s ran a marathon on 2008, did the Barcelona Ironman in 2018, and in July of this year climbed Kilimanjaro.  She assisted in the Guinness World Record Attempt for the Highest Harp Concert in aid of CF Ireland. She also reminds everyone with CF to think about what your Kilimanjaro is. It could be just climbing the stairs. Don't compare yourself to anyone. You do you.

She lives in Ireland with her husband Francis, kids Jamie and Anna and grandson Milo.

Find out more about Caroline's trek up Kilimanjaro and the fundraising for CF Ireland: https://highestharpconcert.com/ 

Link to the story of Triona Priestly, and singer Ed Sheeran's serenade to her: https://www.billboard.com/music/pop/ed-sheeran-serenade-dying-fan-7760540/

CF Ireland: https://www.cfireland.ie

Harp fundraising: https://www.justgiving.com/fundraising/highest-harp#:~:text=The%20Highest%20Harp%20Concert%20Team,19%2C340ft%20on%20Mount%20Kilimanjaro

Producer: Beth Vanstone  If you'd like to be featured contact her at: beth@thebonnellfoundation.org

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Carre talks about how she went into survival mode and being in what felt like a hopeless situation. Carre embraced being an imperfect human and figured out how to thrive inspired by her massive loss.

Carre has released three records, and is in the process of writing a book about life with CF.  Life with CF as a punk rock, Indie rock singer with hemoptysis (coughing up blood) happening in between or during gigs.

Carre is in a loving relationship and doing well. Check her out on Instagram!

Follow Queen Kwong: https://www.instagram.com/queenkwong/

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Dr. John Schuen is the division Chief of Pediatric Aerodigestive Specialties at Helen DeVos Children’s hospital in Grand Rapids.  He is also the director of the CF care center.  We’re talking to Dr. Schuen to discuss all that they have going on for CF patients in Grand Rapids. And why he decided to become a CF doctor.

You are a specialist in so many areas, in addition to CF, in sleep medicine as well.  Why did you decide to become a doctor, and specifically why did CF draw you in?

I wanted to do this podcast to highlight all the great things that you and Dr. Susan Millard are doing and Dr. Johanna Zea-Hernandez. Overall how many patients do you have in the pediatric department and what are you seeing since the latest modulator came about in 2019?

(Laura did have a cold through this podcast).

--------------------------------

John Schuen serves as division chief of Pediatric Aerodigestive Specialties at Helen DeVos Children’s Hospital. Schuen provides medical care of children with complex pulmonary, respiratory related problems and sleep disorders. He also serves as medical director of the pediatric sleep laboratory, center director of cystic fibrosis care center at Helen DeVos Children’s Hospital. He is board certified in pediatric pulmonology and sleep medicine.

After matriculating from Albion College, Dr. Schuen earned his medical degree from Michigan State University College of Human Medicine. He completed his residency in pediatrics at the Cleveland Clinic and fellowship in pediatric pulmonology & sleep medicine at Johns Hopkins Hospitals.

Dr. Schuen has been a member of numerous professional organizations including the American Academy of Pediatrics, the American College of Chest Physicians, the American Academy of Sleep Medicine, and the American Thoracic Society.  He serves on statewide and national committees devoted to advancing lung health in children such as the Cystic Fibrosis Newborn Screen Task Force as well as the Center Committee of the Cystic Fibrosis Foundation. The CF Care Center is also a member of the Cystic Fibrosis Learning Network as well as the Therapeutic Development Network. The Helen DeVos Children’s Hospital CF Care center also collaborates with Michigan State University to create and foster new research in their new Cystic Fibrosis Translational Research Program.