Angelman Syndrome Foundation Podcast

Angelman Syndrome Foundation Podcast

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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Avsnitt(41)

Understanding Anxiety and Behavior in Adults with Angelman Syndrome with Dr. Keary

Understanding Anxiety and Behavior in Adults with Angelman Syndrome with Dr. Keary

Share Your Feedback or Recommend New Topics In this episode of the ASF Podcast, Kathryn Ely, ASF Family Resource Director, sits down with Dr. Christopher Keary of Massachusetts General Hospital to dis...

14 Okt 1h 8min

26.2 Miles Together: Todd & Logan’s Chicago Marathon Journey

26.2 Miles Together: Todd & Logan’s Chicago Marathon Journey

Share Your Feedback or Recommend New Topics Chicago-area attorney and father of three, Todd Hill, joins guest host and fellow Angelman dad, AJ Knouff, to share Todd’s adventure taking on 26.2 miles at...

5 Okt 41min

ASPIRE Trial Results: A Panel Discussion

ASPIRE Trial Results: A Panel Discussion

Share Your Feedback or Recommend New Topics ASF CEO, Amanda Moore sits down with researchers and clinicians who understand both the science and the lived experience of Angelman syndrome. They discuss ...

30 Sep 59min

The Paper Bag Plan: Caregiving, Independence, and Planning Ahead

The Paper Bag Plan: Caregiving, Independence, and Planning Ahead

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...

27 Jan 42min

Protecting Your Mental Health During the Holidays

Protecting Your Mental Health During the Holidays

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...

18 Dec 202530min

Advocacy Abby: Opening Doors to Resources and Relief

Advocacy Abby: Opening Doors to Resources and Relief

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...

10 Nov 202545min

Advocating for Access: How Policy Shapes the Future of Gene Therapy

Advocating for Access: How Policy Shapes the Future of Gene Therapy

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...

30 Okt 202524min

Rest Assured: Safe Sleep for Angelman Families

Rest Assured: Safe Sleep for Angelman Families

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...

10 Okt 202533min

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