Angelman Syndrome Foundation Podcast
Angelman Syndrome Foundation Podcast
Latest Episodes
ASPIRE Trial Results: A Panel Discussion
ASF CEO, Amanda Moore sits down with researchers and clinicians who understand both the science and the lived experience of Angelman syndrome. They discuss what the ASPIRE results tell us, what they don’t tell us, and what researchers can learn...
The Paper Bag Plan: Caregiving, Independence, and Planning Ahead
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 Plan; and Tina Taosoga, an Angelman mom and longtime advocate.The discu...
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...
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...
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 ...