https://simplecast.com PPMD’s Living Duchenne podcast brings together community voices to talk about navigating the Duchenne experience. 2024 - Parent Project Muscular Dystrophy en Thu, 26 Sep 2024 13:31:08 +0000 Tue, 1 Oct 2024 18:13:08 +0000 https://ppmds-living-duchenne.simplecast.com https://image.simplecastcdn.com/images/b317b0bf-7f86-43d0-8ae2-d508d5b0017e/8c41b928-5a0a-470e-9106-6e4e99c263a8/3000x3000/icon-podcast-01.jpg?aid=rss_feed https://ppmds-living-duchenne.simplecast.com episodic PPMD’s Living Duchenne podcast brings together community voices to talk about navigating the Duchenne experience. Parent Project Muscular Dystrophy false https://feeds.simplecast.com/9HuNIKtn muscular dystrophy, becker, becker muscular dystrophy, duchenne, duchenne muscular dystrophy, parent project md, parent project muscular dystrophy, ppmd Parent Project Muscular Dystrophy podcast@parentprojectmd.org ed9efe70-5bbe-4203-be69-e2dd3b8ec1d1 Thu, 26 Sep 2024 13:31:08 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/ppmd-living-duchenne-focus-on-siblings-1IFHC6Rw PPMD Living Duchenne: Focus on Siblings Parent Project Muscular Dystrophy 00:35:16 We're rounding out Season 6 of Living Duchenne talking about the impact of Duchenne behavior on siblings. This conversation features fantastic guests, Colleen Labbadia, a Duchenne mom and counselor, and Hannah Divin, an older sibling of a brother with Duchenne. They join our host, Rachel Poysky, to share honest, heartfelt, and humorous perspectives on the world seen and experienced through a sibling's eyes. In this episode we chat about having open discussions about your sibling's needs, feelings, and experiences; making sure there's room for everyone's emotions; and finding the right ways to acknowledge that "everybody has a 'hard'" and it's important to keep an open, fluid dialogue about each family member's unique relationship to Duchenne. Join us! We're rounding out Season 6 of Living Duchenne talking about the impact of Duchenne behavior on siblings. This conversation features fantastic guests, Colleen Labbadia, a Duchenne mom and counselor, and Hannah Divin, an older sibling of a brother with Duchenne. They join our host, Rachel Poysky, to share honest, heartfelt, and humorous perspectives on the world seen and experienced through a sibling's eyes. In this episode we chat about having open discussions about your sibling's needs, feelings, and experiences; making sure there's room for everyone's emotions; and finding the right ways to acknowledge that "everybody has a 'hard'" and it's important to keep an open, fluid dialogue about each family member's unique relationship to Duchenne. Join us! false full 4 6 ac313180-9f0d-41b0-b94a-0e4688928744 Wed, 7 Aug 2024 04:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/ppmd-living-duchenne-understanding-the-why-duchenne-behaviors-rmrS4i__ PPMD Living Duchenne: Understanding the Why-Duchenne Behaviors Parent Project Muscular Dystrophy 00:36:06 Join us for another great conversation on Living Duchenne in our season focusing on the intersection of behaviors and the Duchenne experience. In this episode, our host Rachel Poysky chats with Dr. Felix Wu, PhD in Industrial Organization Psychology who also lives with Duchenne. Dr. Wu gives candid insight into the behaviors he's grappled with as his Duchenne has progressed. He talks about "understanding the why" behind various behaviors--recognizing that factors such as frustration, anxiety, grief, and insecurity (on both the part of parents and family members) play roles in the Duchenne dynamic as much as biology and neurology. Join us for another great conversation on Living Duchenne in our season focusing on the intersection of behaviors and the Duchenne experience. In this episode, our host Rachel Poysky chats with Dr. Felix Wu, PhD in Industrial Organization Psychology who also lives with Duchenne. Dr. Wu gives candid insight into the behaviors he's grappled with as his Duchenne has progressed. He talks about "understanding the why" behind various behaviors--recognizing that factors such as frustration, anxiety, grief, and insecurity (on both the part of parents and family members) play roles in the Duchenne dynamic as much as biology and neurology. false full 3 6 7cda7595-3b28-47fd-9a34-b4aed288525c Mon, 22 Jul 2024 04:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/living-duchenne-duchenne-behaviors-its-a-marathon-not-a-sprint-N_fnzB0f Living Duchenne: It's A Marathon, Not a Sprint - Normalizing Behaviors Parent Project Muscular Dystrophy 00:42:36 On this episode of Living Duchenne, host Rachel Poysky is joined by her husband, Dr. James Poysky, a Pediatric Neuropsychologist, for a conversation about insights into the connections between the Duchenne brain and challenging behaviors. Join us for a wide-ranging discussion between two Duchenne parents about managing expectations, bringing more transparency to the neurological nuances of Duchenne, and finding the right resources and practices that work for your family. From the cast: "Neurologically things are harder for them, and we have to take that into account." -James Poysky. On this episode of Living Duchenne, host Rachel Poysky is joined by her husband, Dr. James Poysky, a Pediatric Neuropsychologist, for a conversation about insights into the connections between the Duchenne brain and challenging behaviors. Join us for a wide-ranging discussion between two Duchenne parents about managing expectations, bringing more transparency to the neurological nuances of Duchenne, and finding the right resources and practices that work for your family. From the cast: "Neurologically things are harder for them, and we have to take that into account." -James Poysky. false full 2 6 fcd06149-588e-4922-840c-f9ca5c645566 Mon, 24 Jun 2024 19:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/living-duchenne-it-just-might-look-different-normalizing-behaviors-XOJiRCz8 Living Duchenne: It Just Might Look Different-Normalizing Behaviors Parent Project Muscular Dystrophy 00:40:12 Join us for a new season of Living Duchenne! In these episodes our host Rachel Poysky sits down with guests to talk about understanding and normalizing behaviors related to the Duchenne experience. In our first episode, “It Just Might Look a Little Different,” guests Jessica Rownd and Dawn Rezkalla discuss the challenges of behaviors impacting daily life with Duchenne. They offer practical strategies that have empowered their sons and improved their families’ quality of life. From educating the educators to finding support and giving themselves room to breathe and innovate as parents doing their best, Jessica, Dawn, and Rachel share valuable insights, humor, and tips every family can use! Join us for a new season of Living Duchenne! In these episodes our host Rachel Poysky sits down with guests to talk about understanding and normalizing behaviors related to the Duchenne experience. In our first episode, “It Just Might Look a Little Different,” guests Jessica Rownd and Dawn Rezkalla discuss the challenges of behaviors impacting daily life with Duchenne. They offer practical strategies that have empowered their sons and improved their families’ quality of life. From educating the educators to finding support and giving themselves room to breathe and innovate as parents doing their best, Jessica, Dawn, and Rachel share valuable insights, humor, and tips every family can use! false full 1 6 cb114664-de0b-45ff-bfd8-f7dc10e23750 Fri, 2 Dec 2022 14:40:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/ppmd-living-duchenne-from-coach-to-lifelong-connection-8Y1RAmTk From Coach to Lifelong Connection Parent Project Muscular Dystrophy 00:27:18 For a lot of people fall is synonymous with football and for those in the muscular dystrophy community, that means Coach To Cure MD. Parent Project Muscular Dystrophy's nationwide initiative partners with the American Football Coaches Association (AFCA) to educate about Duchenne and Becker and raise funds for research. Every September high school and college coaches sport the “Coach To Cure MD” patches at games and talk about ways to support individuals with Duchenne at press conferences and other media events. These coaches, along with their teams, also forge special connections with families and individuals with Duchenne both on and off the field. In this episode, we hear from Jack, Brian, and Karen Wolf and Coach Keith Otterbein of Hillsdale College about their enduring friendship sparked through this incredible program. For a lot of people fall is synonymous with football and for those in the muscular dystrophy community, that means Coach To Cure MD. Parent Project Muscular Dystrophy's nationwide initiative partners with the American Football Coaches Association (AFCA) to educate about Duchenne and Becker and raise funds for research. Every September high school and college coaches sport the “Coach To Cure MD” patches at games and talk about ways to support individuals with Duchenne at press conferences and other media events. These coaches, along with their teams, also forge special connections with families and individuals with Duchenne both on and off the field. In this episode, we hear from Jack, Brian, and Karen Wolf and Coach Keith Otterbein of Hillsdale College about their enduring friendship sparked through this incredible program. false full 1 5 7b06d6e7-aa90-458d-a2b0-514e6aae85db Mon, 26 Sep 2022 13:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/ppmd-living-duchenne-women-living-duchenne-Rwt7fu5X Women Living Duchenne Parent Project Muscular Dystrophy 00:34:36 Dystrophinopathy is not exclusive to males. Though rare, women can also be affected by the disease, which raises different kinds of questions, challenges, and discoveries. On this episode, Deb Jansen and Mariana Livingston join host Rachel Poysky to offer their thoughts and insights about the complexities of the way the disease manifests in women and what we can do to raise awareness and provide more support for women living Duchenne. Dystrophinopathy is not exclusive to males. Though rare, women can also be affected by the disease, which raises different kinds of questions, challenges, and discoveries. On this episode, Deb Jansen and Mariana Livingston join host Rachel Poysky to offer their thoughts and insights about the complexities of the way the disease manifests in women and what we can do to raise awareness and provide more support for women living Duchenne. false full 4 4 451f2d27-5a99-4597-a460-845d8b12f507 Mon, 19 Sep 2022 04:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/ppmd-living-duchenne-make-space-for-you-i1iQvAsv Make Space for YOU Parent Project Muscular Dystrophy 00:35:15 The good news: there is no wrong way to practice self-care. The even better news: self-care comes in all shapes and sizes; it’s infinitely customizable by you, for you! Our host Rachel Poysky sits down with Duchenne moms, Betty Vertin and Jill Castle for some candid conversation about the many paths to self-care empowerment. The good news: there is no wrong way to practice self-care. The even better news: self-care comes in all shapes and sizes; it’s infinitely customizable by you, for you! Our host Rachel Poysky sits down with Duchenne moms, Betty Vertin and Jill Castle for some candid conversation about the many paths to self-care empowerment. false full 3 4 491cbaa4-309f-41dc-b092-d626cabfecc1 Mon, 12 Sep 2022 04:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/ppmd-living-duchenne-caring-for-carriers-u1JlstpX Caring for Carriers Parent Project Muscular Dystrophy 00:30:22 Whether you’re a woman who is a carrier for Duchenne or are close to a family member or loved one with a carrier status, it’s important to put physical and emotional wellness in focus. On this episode, we’re joined by Trina Stelly and Mindy Cameron who talk candidly with host, Rachel Poysky about their experiences navigating a carrier status and what they find both rewarding and challenging about taking control of their health. Whether you’re a woman who is a carrier for Duchenne or are close to a family member or loved one with a carrier status, it’s important to put physical and emotional wellness in focus. On this episode, we’re joined by Trina Stelly and Mindy Cameron who talk candidly with host, Rachel Poysky about their experiences navigating a carrier status and what they find both rewarding and challenging about taking control of their health. false full 2 4 9f065726-383e-4a08-b209-d67f4c9e76b2 Wed, 7 Sep 2022 10:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/ppmd-living-duchenne-in-conversation-with-diverse-caregivers-cJMKLjZ5 In Conversation with Diverse Caregivers Parent Project Muscular Dystrophy 00:29:14 From siblings to grandparents to aunts and uncles and partners–a Duchenne or Becker diagnosis impacts across every family member, many of whom take on their own type of caregiving roles. Our host Rachel Poysky sits down with guests Susan Samuelson, Alyson Teal, and Hilary Becker who offer their unique insights on caring for a loved one with Duchenne and Becker, supporting primary caregivers, and sharing their own struggles and discoveries as people who “live Duchenne and Becker” from a different perspective. From siblings to grandparents to aunts and uncles and partners–a Duchenne or Becker diagnosis impacts across every family member, many of whom take on their own type of caregiving roles. Our host Rachel Poysky sits down with guests Susan Samuelson, Alyson Teal, and Hilary Becker who offer their unique insights on caring for a loved one with Duchenne and Becker, supporting primary caregivers, and sharing their own struggles and discoveries as people who “live Duchenne and Becker” from a different perspective. false full 1 4 0056899e-9681-41fd-a414-e4ced64b13c5 Wed, 8 Jun 2022 19:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/making-the-most-of-conference-QnX89ZcO BONUS EPISODE: Making the Most of PPMD's Annual Conference Parent Project Muscular Dystrophy 00:35:47 We're getting excited for PPMD's 2022 Annual Conference with this special BONUS EPISODE of Living Duchenne about making the most out of YOUR Conference Experience. Join our host Rachel Poysky along with special guests, Jessica Rownd, John Killian, and Linda Cripe as they share their insights and stories on what makes conference a positive, empowered, inspiring event for the entire family. We're getting excited for PPMD's 2022 Annual Conference with this special BONUS EPISODE of Living Duchenne about making the most out of YOUR Conference Experience. Join our host Rachel Poysky along with special guests, Jessica Rownd, John Killian, and Linda Cripe as they share their insights and stories on what makes conference a positive, empowered, inspiring event for the entire family. false full 5 3 2d2f7d0a-b47a-4159-a483-9a3ed420ade7 Mon, 18 Apr 2022 13:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/add-more-play-to-your-day-Id2wFZoD Add More Play To Your Day Parent Project Muscular Dystrophy 00:27:55 Ralph Waldo Emerson wrote: “It is a happy talent to know how to play.” Fun, joy, laughter, letting loose, and taking breaks from our routines to relax and play are all vital parts of physical, mental, and emotional health and wellbeing. On this episode Rachel sits down with Duchenne parent Colleen Labbadia and Physical Therapist Claudia Senesac to chat about the importance of making time for family fun and how to spot creative opportunities to add more play into your day. Ralph Waldo Emerson wrote: “It is a happy talent to know how to play.” Fun, joy, laughter, letting loose, and taking breaks from our routines to relax and play are all vital parts of physical, mental, and emotional health and wellbeing. On this episode Rachel sits down with Duchenne parent Colleen Labbadia and Physical Therapist Claudia Senesac to chat about the importance of making time for family fun and how to spot creative opportunities to add more play into your day. false full 4 3 9a8a6a8a-47c1-4261-9bf1-f5fc2f5a2111 Mon, 11 Apr 2022 13:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/bite-sized-wellness-tips-knHs_7kH Snack On This: Bite-Sized Wellness Tips Parent Project Muscular Dystrophy 00:28:23 Let’s face it, sometimes taking a yoga class or finding time to try meditation is not simply realistic in a family with Duchenne. Why follow the wellness rules when you can simply make your own? Duchenne parents Tiffany Herring and Kindann Fawcett join Rachel to talk about accessible, reasonable ways to incorporate nutrition and physical activity into your busy routines. Listeners will hear creative solutions by real people that they can easily customize to fit their unique family dynamic. Let’s face it, sometimes taking a yoga class or finding time to try meditation is not simply realistic in a family with Duchenne. Why follow the wellness rules when you can simply make your own? Duchenne parents Tiffany Herring and Kindann Fawcett join Rachel to talk about accessible, reasonable ways to incorporate nutrition and physical activity into your busy routines. Listeners will hear creative solutions by real people that they can easily customize to fit their unique family dynamic. false full 3 3 d6d40f8b-738b-47b3-b758-40094d957532 Mon, 4 Apr 2022 13:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/today-is-just-ok-aKlL4qb7 Today Is Just OK, and That Is OK Parent Project Muscular Dystrophy 00:33:16 “You’re doing great!” “Keep going!” “You’ve got this!” We all see the cheery, inspirational posts on social media, but maybe you find yourself thinking: “I don’t have this at all.” Not only is that okay, but guess what? You’re not alone. On this episode, Rachel leads a refreshing, lighthearted conversation about managing expectations when things look or feel less than “perfect.” Guests and Duchenne parents, Jessica Divin and Alisha Taylor, join Rachel for some candid talk and humorous stories about navigating roadblocks and finding the lighter side of “parenting fails” that make us human. “You’re doing great!” “Keep going!” “You’ve got this!” We all see the cheery, inspirational posts on social media, but maybe you find yourself thinking: “I don’t have this at all.” Not only is that okay, but guess what? You’re not alone. On this episode, Rachel leads a refreshing, lighthearted conversation about managing expectations when things look or feel less than “perfect.” Guests and Duchenne parents, Jessica Divin and Alisha Taylor, join Rachel for some candid talk and humorous stories about navigating roadblocks and finding the lighter side of “parenting fails” that make us human. false full 2 3 602a453c-bbc6-4cfb-afe5-0465e7296cb8 Mon, 28 Mar 2022 13:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/living-duchenne-counseling-tqown3Vm Let’s Chat About Counseling Parent Project Muscular Dystrophy 00:29:19 For some, counseling and therapy may seem a bit mysterious or even a little scary or overwhelming. The good news–it doesn’t have to be! On this episode, Rachel chats with guests Lauren Fritz (Duchenne parent and licensed counselor) and Maria McDonnell (Duchenne parent) as they share their individual experiences with counseling and how it has positively impacted their mental health and wellbeing. For some, counseling and therapy may seem a bit mysterious or even a little scary or overwhelming. The good news–it doesn’t have to be! On this episode, Rachel chats with guests Lauren Fritz (Duchenne parent and licensed counselor) and Maria McDonnell (Duchenne parent) as they share their individual experiences with counseling and how it has positively impacted their mental health and wellbeing. false full 1 3 0753911a-fcf7-4836-8053-d3abd6891b11 Mon, 20 Dec 2021 14:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/ppmd-living-duchenne-making-social-connections-R2Be7v0c Making Social Connections Parent Project Muscular Dystrophy 00:21:52 On this final episode of season 2 of PPMD's Living Duchenne, we are joined by DeAnne Friar, parent and PPMD Connect Michigan coordinator and Nicole Herring, PPMD's Vice President, Development & Community Engagement. Our host, Rachel Poysky, leads a discussion about the importance of making social connections to manage the diagnosis of Duchenne through support networks both locally and nationally. On this final episode of season 2 of PPMD's Living Duchenne, we are joined by DeAnne Friar, parent and PPMD Connect Michigan coordinator and Nicole Herring, PPMD's Vice President, Development & Community Engagement. Our host, Rachel Poysky, leads a discussion about the importance of making social connections to manage the diagnosis of Duchenne through support networks both locally and nationally. false full 4 2 8ba26e0e-7c8a-4de2-b332-83eeb731fada Mon, 13 Dec 2021 14:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/living-duchenne-expanding-the-teen-and-adult-community-T8M2gQAU Growing The Teen & Adult Community Parent Project Muscular Dystrophy 00:31:12 Patrick Moeschen and Adith Thummalapalli join our host Rachel Poysky to talk about the importance of forging social bonds in the Duchenne and Becker teen and adult community. Patrick Moeschen and Adith Thummalapalli join our host Rachel Poysky to talk about the importance of forging social bonds in the Duchenne and Becker teen and adult community. false full 3 2 0fd51a4c-bc0b-425b-b743-3edee953932b Mon, 6 Dec 2021 05:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/finding-your-us-84DFeVao Finding Your "Us" Parent Project Muscular Dystrophy 00:31:04 On the second episode of this season, we are joined by Duchenne moms Jessica Divin and Maria Jose Contreras to talk about making space on the Duchenne journey for connection with other parents and caregivers. On the second episode of this season, we are joined by Duchenne moms Jessica Divin and Maria Jose Contreras to talk about making space on the Duchenne journey for connection with other parents and caregivers. false full 2 2 7ecd1771-9873-4a82-9053-3776e5b5d159 Mon, 29 Nov 2021 14:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/living-duchenne-se2-ep-1-how-we-began-fKJWRotN How We Began Parent Project Muscular Dystrophy 00:36:12 Welcome to Season 2 of Living Duchenne! This season we are exploring "Building Community" and finding the silver lining of Duchenne. On our first episode, we are are excited to welcome PPMD's co-founders Pat Furlong and Donna Saccomanno. Join us to hear Pat and Donna talk about what it took to create community and connection in a time before the Internet made it easier for us to find one another and when muscular dystrophy research was still in its infancy. Welcome to Season 2 of Living Duchenne! This season we are exploring "Building Community" and finding the silver lining of Duchenne. On our first episode, we are are excited to welcome PPMD's co-founders Pat Furlong and Donna Saccomanno. Join us to hear Pat and Donna talk about what it took to create community and connection in a time before the Internet made it easier for us to find one another and when muscular dystrophy research was still in its infancy. false full 1 2 0e30df9c-ecb5-4b91-a112-2d344bdde45a Mon, 27 Sep 2021 13:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/life-skills-for-independence-Hz_r_yHk Life Skills for Independence Parent Project Muscular Dystrophy 00:35:13 Our host, Rachel Poysky, brings together guests Angela Wrigglesworth, educator and disability advocate, and Gretchen Egner, parent and PPMD’s Connect Wisconsin Coordinator, to discuss life skills that foster and encourage independence. The discussion also includes the role of outside caregivers, and how they can help your child develop communication skills, self-confidence, and a greater sense of control and autonomy over their life. Our host, Rachel Poysky, brings together guests Angela Wrigglesworth, educator and disability advocate, and Gretchen Egner, parent and PPMD’s Connect Wisconsin Coordinator, to discuss life skills that foster and encourage independence. The discussion also includes the role of outside caregivers, and how they can help your child develop communication skills, self-confidence, and a greater sense of control and autonomy over their life. false full 4 1 7fae12a1-f7cc-40c7-acf4-d2739c93478f Mon, 20 Sep 2021 13:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/preparing-to-launch-care-and-support-for-children-and-teens-Vd9wiJeb Preparing to Launch: Care and Support for Children and Teens Parent Project Muscular Dystrophy 00:25:47 On the 3rd episode of Living Duchenne, our host, Rachel Poysky, is joined by special guests Adam Wechsler, PPMD Adult Advisory Committee (PAAC) member, and Christina Trout, advanced practice nurse, to discuss planning for transition into adulthood. This conversation emphasizes the importance of building community, accessing important resources, and how it’s never too early to start preparing for your child’s future. On the 3rd episode of Living Duchenne, our host, Rachel Poysky, is joined by special guests Adam Wechsler, PPMD Adult Advisory Committee (PAAC) member, and Christina Trout, advanced practice nurse, to discuss planning for transition into adulthood. This conversation emphasizes the importance of building community, accessing important resources, and how it’s never too early to start preparing for your child’s future. false full 3 1 a1d71938-123d-4d97-80a0-0c83e0c484dc Mon, 13 Sep 2021 15:00:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/when-milestones-look-a-little-different-_Qb5Q4yO When Milestones Look a Little Different Parent Project Muscular Dystrophy 00:26:32 On this episode, our host Rachel Poysky leads a conversation about meeting life milestones and how they make look a little different Living Duchenne. She is joined by special guests Betty Vertin, parent and PPMD Connect Coordinator, and Sarah McMahan, physical therapist, to discuss the importance of not only meeting children with Duchenne where they are, but meeting them where they are supposed to be. On this episode, our host Rachel Poysky leads a conversation about meeting life milestones and how they make look a little different Living Duchenne. She is joined by special guests Betty Vertin, parent and PPMD Connect Coordinator, and Sarah McMahan, physical therapist, to discuss the importance of not only meeting children with Duchenne where they are, but meeting them where they are supposed to be. false full 2 1 45dac5e7-6a59-427e-bbeb-e8b0b0b1f32b Wed, 1 Sep 2021 18:07:00 +0000 podcast@parentprojectmd.org (Parent Project Muscular Dystrophy) https://ppmds-living-duchenne.simplecast.com/episodes/living-duchenne-welcome-M59U1VzS Welcome to PPMD's Living Duchenne Parent Project Muscular Dystrophy 00:23:57 Welcome to PPMD’s podcast, Living Duchenne! In this launch episode, our host, Rachel Poysky, sits down with PPMD’s president and CEO, Pat Furlong and PPMD board and PAAC member (PPMD Adult Advisory Committee) Colin Rensch, to share perspectives on where we started and where we are going as a community, as well as what this means for living Duchenne. Welcome to PPMD’s podcast, Living Duchenne! In this launch episode, our host, Rachel Poysky, sits down with PPMD’s president and CEO, Pat Furlong and PPMD board and PAAC member (PPMD Adult Advisory Committee) Colin Rensch, to share perspectives on where we started and where we are going as a community, as well as what this means for living Duchenne. false full 1 1