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.For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.Follow UsTwitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Biowww.ptcbio.com
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59:28
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. For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.Follow UsTwitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeuticswww.ptcbio.com
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31:43
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. For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.Follow UsTwitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeuticswww.ptcbio.com
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43:47
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. For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.Follow UsTwitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeuticswww.ptcbio.com
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58:55
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. For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.Follow UsTwitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeuticswww.ptcbio.com
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.
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