Insightful Moments: My VIBE

PTC Therapeutics
  • 5.0 (5)
  • Personal Journals
  • Updated Biweekly

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.

  1. 09/17/2025

    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.  For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com. Follow Us Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics www.ptcbio.com Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

    58 min

  2. 12/16/2024

    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. For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com. Follow Us Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Bio www.ptcbio.com

    59 min

  3. 12/05/2023

    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 Us Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics www.ptcbio.com

    32 min

  4. 12/05/2023

    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 Us Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics www.ptcbio.com

    44 min

  5. 12/05/2023

    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 Us Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics www.ptcbio.com

    59 min

  6. 09/05/2023

    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 Us Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics www.ptcbio.com

    57 min

  7. 09/05/2023

    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.  For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com. Follow Us Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics www.ptcbio.com

    1h 4m

  8. 04/26/2023

    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.  For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com. Follow Us Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics www.ptcbio.com

    19 min
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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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