Welcome to the Angelman Syndrome Foundation community! In each episode, Amanda Moore, CEO of Angelman Syndrome Foundation, will discuss Angelman syndrome with experts in their field to provide resources and education to families. From a deep dive into the genetics of Angelman syndrome, to understanding clinical treatments for treating seizures to discussions with IEP specialists and communication specialists, we are here to help as many families as possible on this journey. We are so glad you have joined us and look forward to connecting and supporting this community together.
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Protecting Your Mental Health During the Holidays (00:30:43)
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, navigating grief, supporting siblings, asking for help, and finding moments of joy through radical hones...
Advocacy Abby: Opening Doors to Resources and Relief (00:45:13)
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 more. Together, they discuss how Support Now’s all-in-one platform simplifies fundraising and co...
Advocating for Access: How Policy Shapes the Future of Gene Therapy (00:24:32)
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 policymakers can help make life-changing therapies available to all. + + + Learn more about Ange...
Rest Assured: Safe Sleep for Angelman Families (00:33:54)
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 insurance coverage, and choosing the right safety bed. Plus, how their partnership with ASF helps famili...
Planning for the Future: ASF Housing Champions Share Their Journeys (01:06:02)
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 stories of independence and community connection. + + + Learn more about Angelman Syndrome Foundatio...
Inspired Careers: Siblings and Relatives Share Their Journeys (00:49:20)
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, advocacy, and self-discovery. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Fol...
Talking Toileting with Dr. Colin Muething (00:57:06)
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 readiness signs and starting early, to overcoming public restroom fears, addressing constipation, and en...
The History of Disabilities with Hannah Oppenheim (00:41:16)
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 of disability. Hannah emphasizes the importance of advocacy, inclusion, and ensuring individuals ...
An Interview with "Out of My Mind" Director, Amber Sealey (00:26:41)
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 her personal connection to advocacy, the challenges of making the film, and how storytelling can am...
Genetics 101 (00:53:08)
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 Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect w...
Intensive Therapy: Bryan LaScala and the NAPA Center (00:37:59)
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 navigating complex care journeys. + + + Learn more about Angelman Syndrome Foundation at Angelma...
Epilepsy in Angelman Syndrome (00:59:30)
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 his groundbreaking research on NEM / tremors. You'll gain valuable knowledge and strategies to man...
Food is Medicine (00:37:09)
Share Your Feedback or Recommend New TopicsPeople 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 with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
Decision Fatigue to Peace with Lisa Jamieson (00:42:28)
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 Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndr...
Travel Tips (00:30:43)
Share Your Feedback or Recommend New TopicsGuest 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 Foundation Clinic at Angelman.org/as-clinics.
Top 10 Questions With Amanda Moore (00:35:41)
Share Your Feedback or Recommend New TopicsAmanda 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.
Behavior and Anxiety in Angelman Syndrome (00:48:19)
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 Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman S...
Miles For Smiles w Deanna McCurdy (00:56:29)
Share Your Feedback or Recommend New TopicsInspiring 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-clinics.
Genotypes: A Conversation with Parents (01:07:04)
Share Your Feedback or Recommend New TopicsASF 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.
Adults & Caregiver Support (00:35:08)
Share Your Feedback or Recommend New TopicsParent 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.
An Interview With Angie Kim, Best-Selling Author (01:04:32)
Share Your Feedback or Recommend New TopicsNew 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 at Angelman.org/as-clinics.
Seizure Control & Diet in AS (00:31:44)
Share Your Feedback or Recommend New TopicsDiet 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-clinics.
Financial Planning Q&A (01:34:48)
Share Your Feedback or Recommend New TopicsCaring 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 Syndrome Foundation Clinic at Angelman.org/as-clinics.
All Things Seizures (01:27:47)
Share Your Feedback or Recommend New TopicsDr. 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.
AS Medical Care For All Ages (01:13:50)
Share Your Feedback or Recommend New TopicsIn this previously recorded conversation, listen to medical experts answer commonly asked questions about medical care.+ + +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.
