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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The Paper Bag Plan: Caregiving, Independence, and Planning Ahead (00:42:00)
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...
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 Dire...
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 Conne...
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...
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, tal...
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 an...
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 thei...
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, Dir...
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...
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 ...
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 t...
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 ...
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 syndrom...
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 the...
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 per...
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 ...
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 S...
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, offe...
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.+ + ...
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 ...
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...
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 synd...
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.+ + ...
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 fina...
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 m...
