What is Angelman syndrome?

What is Angelman syndrome?

Share Your Feedback or Recommend New Topics In Episode 1 of the ASF Podcast, Amanda Moore, CEO of Angelman Syndrome Foundation, shares her family's diagnosis journey. Amanda's son, Jackson, is 7 years old and was diagnosed at a young age with AS. Amanda shares her personal experience working with doctors on the diagnosis and which ongoing resources have helped her family most. Amanda also defines AS, what causes it and some overall characteristics of the syndrome. * * * Learn more about Angel...

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Episoder(38)

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 Des 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

Planning for the Future: ASF Housing Champions Share Their Journeys

Planning for the Future: ASF Housing Champions Share Their Journeys

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...

8 Sep 20251h 6min

Inspired Careers: Siblings and Relatives Share Their Journeys

Inspired Careers: Siblings and Relatives Share Their Journeys

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...

27 Aug 202549min

Talking Toileting with Dr. Colin Muething

Talking Toileting with Dr. Colin Muething

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...

13 Aug 202557min

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