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.
Podcasting since 2022 • 37 episodes
Angelman Syndrome Foundation Podcast
Latest Episodes
Protecting Your Mental Health During the Holidays
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 t...
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Season 4
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Episode 8
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30:43
Advocacy Abby: Opening Doors to Resources and Relief
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 disabil...
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Season 4
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Episode 7
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45:13
Advocating for Access: How Policy Shapes the Future of Gene Therapy
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 ...
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Season 4
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Episode 6
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24:32
Rest Assured: Safe Sleep for Angelman Families
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 ...
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Season 4
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Episode 5
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33:54
Planning for the Future: ASF Housing Champions Share Their Journeys
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...
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Season 4
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Episode 3
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1:06:02