Episodi
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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.
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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.
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Episodi mancanti?
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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.
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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.
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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.
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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.
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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.
For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.
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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.
For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.
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Facebook @PTC Therapeutics
Instagram @PTCTherapeutics
Presented by PTC Therapeutics
www.ptcbio.com
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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.
For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.
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Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics
www.ptcbio.com
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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.
For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.
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Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics
www.ptcbio.com
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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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Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics
www.ptcbio.com
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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.
For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com.
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www.ptcbio.com
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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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Twitter @PTCBioFacebook @PTC TherapeuticsInstagram @PTCTherapeuticsPresented by PTC Therapeutics
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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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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.
