Angelman Syndrome Foundation Podcast

Share Your Feedback or Recommend New Topics In this episode, ASF CEO Amanda Moore is joined by Christian Pache, an Angelman dad and ASF board member; Anthony Lucero, the filmmaker behind The Paper Bag Plan ; and Tina Taosoga, an Angelman mom and longtime advocate. The discussion centers on Anthony’s film The Paper Bag Plan , a deeply personal story inspired by real experiences within the disabilit...

Share Your Feedback or Recommend New Topics The holidays can be joyful – and overwhelming – especially for families caring for someone with Angelman syndrome. In this episode, ASF Family Resource Director Kathryn Ely is joined by licensed professional counselor Shannon Barlow, LCPC, to talk openly about protecting mental health during the holiday season. They discuss managing expectations, navigat...

Share Your Feedback or Recommend New Topics In this episode, Amanda sits down with Abby Zachritz, better known as Advocacy Abby, the Director of Family Advocacy at Support Now and creator of the Connect grants database. Abby shares how her personal journey as a mom navigating the disability world inspired her to help other families access financial assistance for therapies, adaptive equipment, and...

Share Your Feedback or Recommend New Topics ASF CEO Amanda Moore talks with former Congressman Erik Paulsen, Chairman of the Institute for Gene Therapies, about how policy and advocacy are shaping the future of gene therapy for rare diseases like Angelman syndrome. They discuss the need for modernized healthcare policies, better access to treatment, and how collaboration across patient groups and...

Share Your Feedback or Recommend New Topics Tired nights, travel challenges, and endless insurance hurdles... sound familiar? In this episode, guest host Liz Thompson, Development Director at ASF, talks with Jon and Amara Smith, Angelman parents and founders of Safe Place Bedding, about practical ways families can create safer, calmer sleep spaces. They share tips for traveling, navigating insuran...

Share Your Feedback or Recommend New Topics In this episode, guest host Kathryn Ely, ASF's Family Resource Director, leads a candid discussion with ASF’s Adult Housing Champions, a group of parents and caregivers navigating the complex world of adult housing for individuals with Angelman syndrome. Hear from each Housing Champion about emotional decisions, practical advice, and their inspiring...

Share Your Feedback or Recommend New Topics In this ASF podcast episode, guest host Chloe Knouff brings together siblings and relatives of individuals living with Angelman syndrome to explore how their loved ones inspired their careers. From special education and disability support to genetic counseling, research, and public health, each guest shares a deeply personal journey of resilience, advoca...

Share Your Feedback or Recommend New Topics Toileting is one of the most common (and often most challenging) milestones for individuals with Angelman syndrome. In this episode, Dr. Colin Muething, Director of the Complex Behavior Support Program at Marcus Autism Center, shares practical, evidence-based strategies for toilet training children and adults with developmental disabilities. From readine...

Share Your Feedback or Recommend New Topics In this episode of the ASF Podcast, CEO Amanda Moore welcomes Hannah Oppenheim, a neurodevelopmental disability fellow, to discuss the history of disability rights and ableism in medicine. They explore key legislation like Section 504, IDEA, and the ADA, the challenges individuals with disabilities face in healthcare, and the shift toward a social model...

Share Your Feedback or Recommend New Topics In this episode of the ASF Podcast, CEO Amanda Moore speaks with filmmaker Amber Sealey about her Disney+ film Out of My Mind , which highlights the journey of a young girl with cerebral palsy. They discuss the importance of disability representation in media, presuming competence in non-verbal individuals, and the realities of caregiving. Amber shares h...

Share Your Feedback or Recommend New Topics In this episode of the ASF podcast, recorded at the 2024 ASF Family Conference, Dr. Rebecca Burdine unpacks the genetics of Angelman syndrome, focusing on the UBE3A gene and its critical role in the brain. She also discusses current therapeutic advancements that offer hope for improving the lives of those with Angelman syndrome. + + + Learn more about An...

Share Your Feedback or Recommend New Topics In this episode, CEO Amanda Moore is joined by Bryan LaScala, CEO of the NAPA Center. Bryan shares the inspiring story of how his mother’s determination to help her son led to the founding of this groundbreaking therapy center. Bryan dives into the benefits of intensive therapy, the individualized approach at NAPA, and how the center supports families na...

Share Your Feedback or Recommend New Topics In this episode, Dr. Mark Nespeca lays the groundwork by identifying and explaining the types of seizures commonly seen in individuals with Angelman syndrome. Dr. Ron Thibert then delves into treatment options and discusses Non-Convulsive Status Epilepticus (NCSE). Dr. Robert Carson wraps up the episode with crucial insights on seizure preparedness and h...

Share Your Feedback or Recommend New Topics People with Angelman syndrome demonstrate a higher than average response to dietary therapy. This podcast provides a better understanding of what dietary therapy is, what benefits are seen and who benefits most, as well as side effects. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect w...

Share Your Feedback or Recommend New Topics Angelman mom, Lisa Jamieson from Walk Right In Ministries, a faith-based organization that supports caregivers, joins CEO Amanda Moore to discuss Lisa's personal experiences as a caregiver and insights on supporting the mental wellbeing of those supporting loved ones with Angelman syndrome. + + + Learn more about Angelman Syndrome Foundation at Ange...

Share Your Feedback or Recommend New Topics Guest hosts AJ and Chloe Knouff are joined by Haily Green of Wondermakers Travel. They talk all things travel including planning, special considerations and tips for trips to Disney. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundatio...

Share Your Feedback or Recommend New Topics Amanda Moore, Angelman Syndrome Foundation CEO, shares the top 10 questions she is asked and how she answers those questions. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics .

Share Your Feedback or Recommend New Topics Christopher Keary, MD, Behavioral Director at the MGH Angelman Syndrome Clinic, and Cesar Ochoa-Lubinoff, MD, MPH, ASF Clinic Director at Cedars-Sinai, offer valuable insights on evaluation, management, and recommended treatment options for unique and challenging behaviors in Angelman syndrome. + + + Learn more about Angelman Syndrome Foundation at Angel...

Share Your Feedback or Recommend New Topics Inspiring mother, advocate and runner, Deanna McCurdy, talks with CEO Amanda Moore about uniting her passion and purpose to create Team Miles for Smiles. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-c...

Share Your Feedback or Recommend New Topics ASF CEO Amanda Moore talks with parents of individuals with AS about the various genotypes and their experiences with how each genotype presents.   + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics...

Share Your Feedback or Recommend New Topics Parent of an 28-year-old daughter with Angelman syndrome, Robin Wilkerson discuss the importance of community and how to support adults. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics .

Share Your Feedback or Recommend New Topics New York Times best-selling author Angie Kim discusses her new heart-wrenching thriller book "Happiness Falls" and the character Eugene who has Angelman syndrome. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic a...

Share Your Feedback or Recommend New Topics Diet is so important to controlling seizures individuals with AS. Learn more about the ketogenic diet from Mass General Hospital dietician Heidi Pfeifer. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-c...

Share Your Feedback or Recommend New Topics Caring and planning for the future of a family member with special needs is often overwhelming. Mary Anne Ehlert from Protected Tomorrows answers common financial questions from Angelman families. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Synd...

Share Your Feedback or Recommend New Topics Dr. Ron Thibert, ASF Clinician at Massachusetts General Hospital, discusses everything families need to know about seizures in Angelman syndrome. + + + Learn more about Angelman Syndrome Foundation at Angelman.org . Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics .