https://simplecast.com Insightful Moments: My VIBE Everyone in the rare disease community has a story and every individual, every parent, every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together. 2023 en Wed, 17 Sep 2025 20:55:12 +0000 Wed, 17 Sep 2025 20:55:23 +0000 https://insightful-moments-my-vibe.simplecast.com Insightful Moments: My VIBE https://image.simplecastcdn.com/images/a9c642c9-78ee-4dd3-98d0-b1ec7a0675ae/62d634e4-4d34-4d3f-9ddc-7474b3eee54b/3000x3000/ptc-bio-art-1.jpg?aid=rss_feed https://insightful-moments-my-vibe.simplecast.com episodic Everyone in the rare disease community has a story and every individual, every parent, every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together. PTC Therapeutics false https://feeds.simplecast.com/N1n3OMtU rare disease, stories PTC Therapeutics stories@amazemedialabs.com d69507d3-3d89-466a-89f4-289672328a23 Friedreich's Ataxia Symposium Part 1 Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Emily Hintze attended the Friedreich's Ataxia Symposium hosted by the Friedreich's Ataxia Research Alliance and Children's Hospital of Philadelphia in King of Prussia, Pennsylvania, where she spoke with a number of people who are affected by Friedreich's Ataxia, or FA. You’ll hear from several symposium attendees as they share stories about their journeys with FA, the connection between physical and mental health, and so much more. So join us for this insightful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Wed, 17 Sep 2025 20:55:12 +0000 stories@amazemedialabs.com (Emily Hintze) https://insightful-moments-my-vibe.simplecast.com/episodes/friedreichs-ataxia-symposium-part-1-4wwTvMYL Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Emily Hintze attended the Friedreich's Ataxia Symposium hosted by the Friedreich's Ataxia Research Alliance and Children's Hospital of Philadelphia in King of Prussia, Pennsylvania, where she spoke with a number of people who are affected by Friedreich's Ataxia, or FA. You’ll hear from several symposium attendees as they share stories about their journeys with FA, the connection between physical and mental health, and so much more. So join us for this insightful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Friedreich's Ataxia Symposium Part 1 Emily Hintze 00:57:45 Emily Hintze sits down with guests who are affected by Friedreich's Ataxia to discuss the connection between physical and mental health, and more. Emily Hintze sits down with guests who are affected by Friedreich's Ataxia to discuss the connection between physical and mental health, and more. false full 5 2 be6c63d4-ca51-423e-a48c-d6bad560a65a The Parenting Challenge Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. It is Day 2 at the 28th annual PPMD conference for physicians, caregivers, and families affected by Duchenne Muscular Dystrophy in Arizona. In today’s episode, Paula Orandash is speaking with individuals and families affected by DMD about how they’ve learned to cultivate and maintain their own independence as well as find support when they needed it. You’ll hear Darrell discuss the challenge of  being a single parent to a child with Duchenne. You’ll also hear from Jim and Audra as they tell us about transitioning their son from a manual to a motorized wheelchair. Last, we have Hulda, who tells us about how she learned to help herself, and how she’s using what she learned to encourage others in the most amazing way. So press play and join us for another thoughtful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics.

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]]> Mon, 16 Dec 2024 17:11:42 +0000 stories@amazemedialabs.com (PTC Therapeutics) https://insightful-moments-my-vibe.simplecast.com/episodes/the-parenting-challenge-gJ6qCGP6 Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. It is Day 2 at the 28th annual PPMD conference for physicians, caregivers, and families affected by Duchenne Muscular Dystrophy in Arizona. In today’s episode, Paula Orandash is speaking with individuals and families affected by DMD about how they’ve learned to cultivate and maintain their own independence as well as find support when they needed it. You’ll hear Darrell discuss the challenge of  being a single parent to a child with Duchenne. You’ll also hear from Jim and Audra as they tell us about transitioning their son from a manual to a motorized wheelchair. Last, we have Hulda, who tells us about how she learned to help herself, and how she’s using what she learned to encourage others in the most amazing way. So press play and join us for another thoughtful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics.

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]]> The Parenting Challenge PTC Therapeutics 00:59:28 Paula Orandash speaks to parents with children affected by Duchenne Muscular Dystrophy, to learn about how they are finding and sharing support. Paula Orandash speaks to parents with children affected by Duchenne Muscular Dystrophy, to learn about how they are finding and sharing support. false full 4 1 4e80f190-4ba7-4d3e-8b61-35a396592c17 Friedreich's Ataxia Symposium Part 2 Welcome back to another installment of Insightful Moments: My VIBE, presented by PTC Therapeutics. Previously, Emily Hintze attended the Friedreich's Ataxia Symposium hosted by the Friedreich's Ataxia Research Alliance and Children's Hospital of Philadelphia in King of Prussia, Pennsylvania, where she spoke with a number of people who are affected by Friedreich's Ataxia, or FA. For this part 2 episode you’ll hear from two guests in the F.A. community as they share insightful stories about their journeys with FA, and how they have turned advocacy into action. So press play and join us for this wonderful part 2 episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Tue, 5 Dec 2023 20:05:42 +0000 stories@amazemedialabs.com (Emily Hintze) https://insightful-moments-my-vibe.simplecast.com/episodes/friedreichs-ataxia-symposium-part-2-gi544XEO Welcome back to another installment of Insightful Moments: My VIBE, presented by PTC Therapeutics. Previously, Emily Hintze attended the Friedreich's Ataxia Symposium hosted by the Friedreich's Ataxia Research Alliance and Children's Hospital of Philadelphia in King of Prussia, Pennsylvania, where she spoke with a number of people who are affected by Friedreich's Ataxia, or FA. For this part 2 episode you’ll hear from two guests in the F.A. community as they share insightful stories about their journeys with FA, and how they have turned advocacy into action. So press play and join us for this wonderful part 2 episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Friedreich's Ataxia Symposium Part 2 Emily Hintze 00:31:43 Emily Hintze is joined by two guests who are affected by Friedreich's Ataxia to discuss their journeys and transformations into advocates for F.A. Emily Hintze is joined by two guests who are affected by Friedreich's Ataxia to discuss their journeys and transformations into advocates for F.A. false full 6 2 27c5de01-aa5a-4956-a780-786083de16d4 Global Genes RARE Advocacy Summit - Part 2 Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the Global Genes RARE Advocacy Summit in San Diego where she spoke with many people who are connected to the rare disease community – whether as parents, caregivers, or as patients themselves. In this part two episode, you’ll hear from three mothers of children with diagnosed rare diseases as they share their stories about the challenges of being a caregiver, the diagnostic journeys they experienced, how they advocate for their children, and so much more. So join us for this insightful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Tue, 5 Dec 2023 19:59:41 +0000 stories@amazemedialabs.com (Paula Orandash, Emily Hintze) https://insightful-moments-my-vibe.simplecast.com/episodes/global-genes-rare-advocacy-summit-part-2-QJ_qBHv_ Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the Global Genes RARE Advocacy Summit in San Diego where she spoke with many people who are connected to the rare disease community – whether as parents, caregivers, or as patients themselves. In this part two episode, you’ll hear from three mothers of children with diagnosed rare diseases as they share their stories about the challenges of being a caregiver, the diagnostic journeys they experienced, how they advocate for their children, and so much more. So join us for this insightful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Global Genes RARE Advocacy Summit - Part 2 Paula Orandash, Emily Hintze 00:43:47 Paula Orandash sits down with three mothers of children with diagnosed rare diseases to discuss their journey as a mother and a caregiver. Paula Orandash sits down with three mothers of children with diagnosed rare diseases to discuss their journey as a mother and a caregiver. false full 4 2 6e41298e-e687-4cf2-93f8-d89d22653c25 Global Genes RARE Advocacy Summit - Part 1 Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the Global Genes RARE Advocacy Summit in San Diego where she spoke with many people who are connected to the rare disease community – whether as parents, caregivers, or as patients themselves. In this episode, you’ll hear from a selection of summit attendees who share their experiences with undiagnosed conditions - both the struggles and the moments of triumph. So join us for this insightful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Tue, 5 Dec 2023 19:55:47 +0000 stories@amazemedialabs.com (Paula Orandash, Emily Hintze) https://insightful-moments-my-vibe.simplecast.com/episodes/global-genes-rare-advocacy-summit-part-1-m1W_JD43 Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the Global Genes RARE Advocacy Summit in San Diego where she spoke with many people who are connected to the rare disease community – whether as parents, caregivers, or as patients themselves. In this episode, you’ll hear from a selection of summit attendees who share their experiences with undiagnosed conditions - both the struggles and the moments of triumph. So join us for this insightful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Global Genes RARE Advocacy Summit - Part 1 Paula Orandash, Emily Hintze 00:58:55 Paula Orandash sits down with patients and their loved ones affected by undiagnosed diseases to discuss the impact on their lives. Paula Orandash sits down with patients and their loved ones affected by undiagnosed diseases to discuss the impact on their lives. false full 3 2 aef94a45-e1fd-4397-8d37-17d7c2f725a8 The Effects of Huntington’s Disease - Part 2 Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. This is part 2 of host Paula Orandash at the 38th annual convention of the Huntington's Disease Society of America in New Orleans where she continues to speak with people who have been affected by Huntington's Disease, or HD. HD is an incurable neurodegenerative disease that affects many different areas of the brain. Symptoms can vary but usually involve a progressive breakdown of the patient’s behavior, mobility, speech, and motor symptoms, over the course of years or decades. Symptoms can really begin to appear at any age, though they most commonly start in adulthood.  For this episode, you’ll hear from more people, whether it’s parents, children or other adults, who are impacted by the disease and learn ​what it’s like​ living with HD, as well as what it’s like being a caregiver of a loved one with HD. So join us for this insightful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Tue, 5 Sep 2023 20:35:18 +0000 stories@amazemedialabs.com (Paula Orandash) https://insightful-moments-my-vibe.simplecast.com/episodes/the-effects-of-huntingtons-disease-part-2-490UXroR Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. This is part 2 of host Paula Orandash at the 38th annual convention of the Huntington's Disease Society of America in New Orleans where she continues to speak with people who have been affected by Huntington's Disease, or HD. HD is an incurable neurodegenerative disease that affects many different areas of the brain. Symptoms can vary but usually involve a progressive breakdown of the patient’s behavior, mobility, speech, and motor symptoms, over the course of years or decades. Symptoms can really begin to appear at any age, though they most commonly start in adulthood.  For this episode, you’ll hear from more people, whether it’s parents, children or other adults, who are impacted by the disease and learn ​what it’s like​ living with HD, as well as what it’s like being a caregiver of a loved one with HD. So join us for this insightful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> The Effects of Huntington’s Disease - Part 2 Paula Orandash 00:57:04 Paula Orandash sits down with patients and their loved ones for part 2 of our discussion on the impact of Huntington's Disease. Paula Orandash sits down with patients and their loved ones for part 2 of our discussion on the impact of Huntington's Disease. false full 2 2 17f40cf0-7174-4b98-88c5-56d5ec481fab The Effects of Huntington’s Disease - Part 1 Welcome back to the first episode of the second season of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, host Paula Orandash attended the 38th annual convention of the Huntington's Disease Society of America in New Orleans where she spoke with people who have been affected by Huntington's Disease, or HD. HD is an incurable neurodegenerative disease that affects many different areas of the brain. Symptoms can vary but usually involve a progressive breakdown of the patient’s behavior, mobility, speech, and motor symptoms, over the course of years or decades. Symptoms can begin to appear at any age, though they most commonly start in adulthood.  In this episode, you’ll hear from a variety of different people who are impacted by the disease and learn ​what it’s like​ living with HD, as well as what it’s like being a caregiver of a loved one with HD - both adults and children. So join us for this thoughtful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Tue, 5 Sep 2023 20:21:13 +0000 stories@amazemedialabs.com (Paula Orandash) https://insightful-moments-my-vibe.simplecast.com/episodes/the-effects-of-huntingtons-disease-part-1-qexPHf1V Welcome back to the first episode of the second season of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, host Paula Orandash attended the 38th annual convention of the Huntington's Disease Society of America in New Orleans where she spoke with people who have been affected by Huntington's Disease, or HD. HD is an incurable neurodegenerative disease that affects many different areas of the brain. Symptoms can vary but usually involve a progressive breakdown of the patient’s behavior, mobility, speech, and motor symptoms, over the course of years or decades. Symptoms can begin to appear at any age, though they most commonly start in adulthood.  In this episode, you’ll hear from a variety of different people who are impacted by the disease and learn ​what it’s like​ living with HD, as well as what it’s like being a caregiver of a loved one with HD - both adults and children. So join us for this thoughtful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> The Effects of Huntington’s Disease - Part 1 Paula Orandash 01:04:29 Paula Orandash sits down with patients and their loved ones to discuss the impact of Huntington's Disease. Paula Orandash sits down with patients and their loved ones to discuss the impact of Huntington's Disease. false full 1 2 0883b84a-586d-4b1b-9c1b-14043a0d67aa Duchenne Sibling Experience (Spanish Episode) Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. Karina Lambertini, Patient Engagement Liaison at PTC, is attending the Akari Foundation workshop in Dallas, which is the foundation’s first hybrid workshop fully in Spanish for families affected by Duchenne Muscular Dystrophy. A family is one of the most solid forms of support you can have, but a family can also face many challenges as they learn to cope with a sibling being diagnosed with DMD. On today's episode Karina is speaking with siblings of those diagnosed with DMD, to hear their experience with the many emotions that come with a sibling affected by a terminal disease, including their mutual love for one another, and learning to lean on other members of the sibling community. Join us for this heartfelt episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Wed, 26 Apr 2023 13:31:49 +0000 stories@amazemedialabs.com (Karina Lambertini) https://insightful-moments-my-vibe.simplecast.com/episodes/duchenne-sibling-experience-spanish-episode-5OvmuuQC Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. Karina Lambertini, Patient Engagement Liaison at PTC, is attending the Akari Foundation workshop in Dallas, which is the foundation’s first hybrid workshop fully in Spanish for families affected by Duchenne Muscular Dystrophy. A family is one of the most solid forms of support you can have, but a family can also face many challenges as they learn to cope with a sibling being diagnosed with DMD. On today's episode Karina is speaking with siblings of those diagnosed with DMD, to hear their experience with the many emotions that come with a sibling affected by a terminal disease, including their mutual love for one another, and learning to lean on other members of the sibling community. Join us for this heartfelt episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Duchenne Sibling Experience (Spanish Episode) Karina Lambertini 00:19:14 Karina Lambertini is joined by siblings of those diagnosed with DMD, to hear their experience and learn more about how they support their loved ones. Karina Lambertini is joined by siblings of those diagnosed with DMD, to hear their experience and learn more about how they support their loved ones. false full 10 1 7d85a839-ee44-48c6-b6dc-72dfa6381511 The Unconditional Love of Duchenne Caregivers (Spanish Episode) Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. On this episode Aurora Flores and Karina Lambertini, Patient Engagement Liaisons at PTC, are attending the Akari Foundation workshop in Dallas, which is the foundation’s first hybrid workshop fully in Spanish for families affected by Duchenne Muscular Dystrophy. The experience of caregiving is a life-altering journey as individuals rise to challenges and reflect on the rewards of caring for a DMD loved one. So join Aurora and Karina as they explore the perspective of three DMD caregivers, a mother, a father, and an aunt and speak with each of them about the impact DMD has made in their lives along with the joys of caring for a DMD family member. Join us for this episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Wed, 29 Mar 2023 19:33:53 +0000 stories@amazemedialabs.com (Aurora Flores, Karina Lambertini) https://insightful-moments-my-vibe.simplecast.com/episodes/the-unconditional-love-of-duchenne-caregivers-spanish-episode-9CsHApTo Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. On this episode Aurora Flores and Karina Lambertini, Patient Engagement Liaisons at PTC, are attending the Akari Foundation workshop in Dallas, which is the foundation’s first hybrid workshop fully in Spanish for families affected by Duchenne Muscular Dystrophy. The experience of caregiving is a life-altering journey as individuals rise to challenges and reflect on the rewards of caring for a DMD loved one. So join Aurora and Karina as they explore the perspective of three DMD caregivers, a mother, a father, and an aunt and speak with each of them about the impact DMD has made in their lives along with the joys of caring for a DMD family member. Join us for this episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> The Unconditional Love of Duchenne Caregivers (Spanish Episode) Aurora Flores, Karina Lambertini 00:54:48 Aurora and Karina are joined by three DMD caregivers, a mother, a father, and an aunt, to explore their perspective and experience providing care. Aurora and Karina are joined by three DMD caregivers, a mother, a father, and an aunt, to explore their perspective and experience providing care. false full 9 1 57b0c3f1-3296-4714-9780-5579fcf776ab Perspective from a Duchenne Mom and Healthcare (Spanish Episode) Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. On this episode, Aurora Flores, Patient Engagement Liaison at PTC, is attending the Akari Foundation workshop in Dallas, which was the foundation’s first hybrid workshop fully in Spanish for families affected by Duchenne Muscular Dystrophy. She is joined by Fabiola, a DMD mother and Psychotherapist. Fabiola found her calling in helping others after her son was diagnosed with DMD. She was motivated to pursue a degree in psychology and thanatology, which is a multidisciplinary field dedicated to better understanding of death, grief and loss, to help others cope with the pain of a terminal diagnosis. She joins Aurora to share her perspective as a mom and therapist for the DMD community. So join us for another thoughtful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics.

 

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]]> Wed, 1 Mar 2023 23:43:42 +0000 stories@amazemedialabs.com (Aurora Flores) https://insightful-moments-my-vibe.simplecast.com/episodes/perspective-from-a-duchenne-mom-and-healthcare-spanish-episode-DvgZWr_Q Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. On this episode, Aurora Flores, Patient Engagement Liaison at PTC, is attending the Akari Foundation workshop in Dallas, which was the foundation’s first hybrid workshop fully in Spanish for families affected by Duchenne Muscular Dystrophy. She is joined by Fabiola, a DMD mother and Psychotherapist. Fabiola found her calling in helping others after her son was diagnosed with DMD. She was motivated to pursue a degree in psychology and thanatology, which is a multidisciplinary field dedicated to better understanding of death, grief and loss, to help others cope with the pain of a terminal diagnosis. She joins Aurora to share her perspective as a mom and therapist for the DMD community. So join us for another thoughtful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics.

 

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]]> Perspective from a Duchenne Mom and Healthcare (Spanish Episode) Aurora Flores 00:18:28 Aurora Flores is joined by DMD mother and Psychotherapist, Fabiola, to share her perspective as a mom and therapist in the DMD community. Aurora Flores is joined by DMD mother and Psychotherapist, Fabiola, to share her perspective as a mom and therapist in the DMD community. false full 8 1 de427311-2a62-46af-91e6-1c621380e12e Navigating Independence with PKU with Maridith, Lauren, and Abigaill Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects the body’s ability to metabolize proteins. It requires a strict monitoring of diet, but has many other challenges and nuances as well. You’ll hear from Maridith about how she navigates college and deals with her PKU symptoms. You’ll also hear from Lauren about how her definition and explanation of PKU has changed from when she was in college to today. And you’ll hear from Abigaill, who was diagnosed with PKU at birth, about how the information given to parents upon diagnosis has greatly improved over the years. Join us for another wonderful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Mon, 19 Dec 2022 14:59:58 +0000 stories@amazemedialabs.com (Paula Orandash) https://insightful-moments-my-vibe.simplecast.com/episodes/navigating-independence-with-pku-with-maridith-lauren-and-abigaill-jM6o0pix Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects the body’s ability to metabolize proteins. It requires a strict monitoring of diet, but has many other challenges and nuances as well. You’ll hear from Maridith about how she navigates college and deals with her PKU symptoms. You’ll also hear from Lauren about how her definition and explanation of PKU has changed from when she was in college to today. And you’ll hear from Abigaill, who was diagnosed with PKU at birth, about how the information given to parents upon diagnosis has greatly improved over the years. Join us for another wonderful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Navigating Independence with PKU with Maridith, Lauren, and Abigaill Paula Orandash 00:58:48 Paula Orandash speaks with Maridith, Lauren, and Abigaill about how they navigate their Independence while living with PKU. Paula Orandash speaks with Maridith, Lauren, and Abigaill about how they navigate their Independence while living with PKU. false full 7 1 b4503179-e824-4c60-b15f-c9ab9408a973 Living with PKU, with Linda and Kendall Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects the body’s ability to metabolize proteins. It requires a strict monitoring of diet, but has many other challenges and nuances for those diagnosed with PKU and their loved ones. You’ll hear from Linda about how she’s struggled to explain PKU to peers, and how access to medical nutrition has changed over time. You’ll also hear from Kendall, who discusses his experiences participating in clinical trials, in addition to how he’s coped with his search for normalcy and inclusion. Join us for another wonderful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Mon, 19 Dec 2022 14:59:19 +0000 stories@amazemedialabs.com (Paula Orandash) https://insightful-moments-my-vibe.simplecast.com/episodes/living-with-pku-with-linda-and-kendall-62RiR_bF Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects the body’s ability to metabolize proteins. It requires a strict monitoring of diet, but has many other challenges and nuances for those diagnosed with PKU and their loved ones. You’ll hear from Linda about how she’s struggled to explain PKU to peers, and how access to medical nutrition has changed over time. You’ll also hear from Kendall, who discusses his experiences participating in clinical trials, in addition to how he’s coped with his search for normalcy and inclusion. Join us for another wonderful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Living with PKU, with Linda and Kendall Paula Orandash 00:34:55 Paula Orandash speaks with Linda and Kendall to learn more about their experiences living with PKU and searching for normalcy. Paula Orandash speaks with Linda and Kendall to learn more about their experiences living with PKU and searching for normalcy. false full 6 1 9f04cfd4-4d9f-4d8d-808f-c259136cebdf Advocating within the PKU Community Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects the body’s ability to metabolize proteins. It requires a strict monitoring of diet, but has many other challenges and nuances for those diagnosed with PKU and their loved ones. You’ll hear from Samantha, who advocates about the importance of diagnosis and symptom education for children with PKU, and runs a blog and an Instagram page to document her journey.  Our second guest is also named Samantha. Holding a Doctorate in Physical Therapy makes her the perfect person to tell us about the Medical Nutrition Equality Act. Join us for another great episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

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]]> Tue, 13 Dec 2022 00:40:43 +0000 stories@amazemedialabs.com (Paula Orandash, Samantha B, Samantha P) https://insightful-moments-my-vibe.simplecast.com/episodes/advocating-within-the-pku-community-9vn65SXG Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects the body’s ability to metabolize proteins. It requires a strict monitoring of diet, but has many other challenges and nuances for those diagnosed with PKU and their loved ones. You’ll hear from Samantha, who advocates about the importance of diagnosis and symptom education for children with PKU, and runs a blog and an Instagram page to document her journey.  Our second guest is also named Samantha. Holding a Doctorate in Physical Therapy makes her the perfect person to tell us about the Medical Nutrition Equality Act. Join us for another great episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics. 

For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.

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]]> Advocating within the PKU Community Paula Orandash, Samantha B, Samantha P 00:34:36 Paula Orandash speaks with two guests named Samantha about advocating within the PKU community. Paula Orandash speaks with two guests named Samantha about advocating within the PKU community. false full 5 1 5917265d-1f2f-4b53-adb1-f547c37c4b4f Independence and Assistance with Ben and Ryan Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. Recently we visited the 28th Annual PPMD conference for physicians, caregivers, and families affected by Duchenne Muscular Dystrophy. In this episode, Paula Orandash speaks with guests Ben and Ryan about how they learned to build up and maintain their independence, even when that meant learning to ask for a helping hand. First, you’ll hear from Ben, who gets a ton of assistance from his service dog Davina. Next, Paula chats with Ryan, who is a Doctor of Psychology, an Eagle Scout, a published author, and was diagnosed with DMD when he was only four. Ryan tells us about his quest for independence and how he helps others find their independence as well.

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]]> Thu, 3 Nov 2022 17:09:36 +0000 stories@amazemedialabs.com (Paula Orandash, Ben, Ryan) https://insightful-moments-my-vibe.simplecast.com/episodes/independence-and-assistance-with-ben-and-ryan-C9OZAL2g Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. Recently we visited the 28th Annual PPMD conference for physicians, caregivers, and families affected by Duchenne Muscular Dystrophy. In this episode, Paula Orandash speaks with guests Ben and Ryan about how they learned to build up and maintain their independence, even when that meant learning to ask for a helping hand. First, you’ll hear from Ben, who gets a ton of assistance from his service dog Davina. Next, Paula chats with Ryan, who is a Doctor of Psychology, an Eagle Scout, a published author, and was diagnosed with DMD when he was only four. Ryan tells us about his quest for independence and how he helps others find their independence as well.

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]]> Independence and Assistance with Ben and Ryan Paula Orandash, Ben, Ryan 00:29:53 Host Paula Orandash speaks with Ben and Ryan, who have Duchenne Muscular Dystrophy, about how they receive assistance and maintain their independence. Host Paula Orandash speaks with Ben and Ryan, who have Duchenne Muscular Dystrophy, about how they receive assistance and maintain their independence. false full 3 1 4bd4d1f7-731c-4a11-b7b6-9bc56fc578ae Sibling Support Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. It is part 2 of day 1! Host Paula Orandash is at the 28th annual PPMD conference for physicians, caregivers, and families affected by Duchenne Muscular Dystrophy. For today’s episode, we continue to talk with individuals and families affected by DMD, specifically we are speaking with siblings of those diagnosed with DMD to hear their experiences processing a spectrum of emotions and learning to lean on other members of the sibling community. Join us for another wonderful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics.

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]]> Thu, 29 Sep 2022 21:55:22 +0000 stories@amazemedialabs.com (Paula Orandash) https://insightful-moments-my-vibe.simplecast.com/episodes/sibling-support-MKjmkyE7 Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. It is part 2 of day 1! Host Paula Orandash is at the 28th annual PPMD conference for physicians, caregivers, and families affected by Duchenne Muscular Dystrophy. For today’s episode, we continue to talk with individuals and families affected by DMD, specifically we are speaking with siblings of those diagnosed with DMD to hear their experiences processing a spectrum of emotions and learning to lean on other members of the sibling community. Join us for another wonderful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics.

For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.

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]]> Sibling Support Paula Orandash 00:40:00 false full 2 1 fa63b1a3-e3a8-42ae-ae3f-4d4cbc4f8d13 Finding Out You Have a Rare Disease Welcome to the first episode of Insightful Moments: My VIBE, presented by PTC-Bio! Join host Paula Orandash as she speaks to patients and their families about their unique experiences in the rare disease community - from diagnosis to overcoming challenges and building a supportive community. It’s day 1 of the 28th annual PPMD conference for physicians, caregivers, and families affected by Duchenne Muscular Dystrophy. For today’s episode, we speak with the parents here at the conference of those diagnosed with DMD about their experiences of discussing the diagnosis with their child and learning to ask for help, as well as the importance of building a strong support system with other families. This is sure to be an insightful episode so press play and join us for Insightful Moments: My VIBE, brought to you by PTC-Bio.

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]]> Tue, 6 Sep 2022 04:00:00 +0000 stories@amazemedialabs.com (Paula Orandash) https://insightful-moments-my-vibe.simplecast.com/episodes/finding-out-you-have-a-rare-disease-krdhs_t7 Welcome to the first episode of Insightful Moments: My VIBE, presented by PTC-Bio! Join host Paula Orandash as she speaks to patients and their families about their unique experiences in the rare disease community - from diagnosis to overcoming challenges and building a supportive community. It’s day 1 of the 28th annual PPMD conference for physicians, caregivers, and families affected by Duchenne Muscular Dystrophy. For today’s episode, we speak with the parents here at the conference of those diagnosed with DMD about their experiences of discussing the diagnosis with their child and learning to ask for help, as well as the importance of building a strong support system with other families. This is sure to be an insightful episode so press play and join us for Insightful Moments: My VIBE, brought to you by PTC-Bio.

For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.

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]]> Finding Out You Have a Rare Disease Paula Orandash 01:16:20 It’s day 1 of the 28th annual PPMD conference and Paula Orandash speaks to families about their experiences in the rare disease community. It’s day 1 of the 28th annual PPMD conference and Paula Orandash speaks to families about their experiences in the rare disease community. false full 1 1 c6053b77-09b1-45f9-bd38-83e6d318dc0a Welcome to Insightful Moments: My VIBE Everyone in the rare disease community has a story, and every individual, every parent, and every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together.


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]]> Mon, 29 Aug 2022 16:22:05 +0000 stories@amazemedialabs.com (Paula Orandash) https://insightful-moments-my-vibe.simplecast.com/episodes/welcome-to-insightful-moments-my-vibe-PbZbFtpx Everyone in the rare disease community has a story, and every individual, every parent, and every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together.


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]]> Welcome to Insightful Moments: My VIBE Paula Orandash 00:00:58 Everyone in the rare disease community has a story, and every individual, every parent, and every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together. Everyone in the rare disease community has a story, and every individual, every parent, and every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together. false trailer 1