Find resources you need to navigate your journey with Angelman syndrome. Whether you are newly diagnosed or looking for ongoing support, you’ll find resources to assist every step of the way. Use filters to search by subtopics, life stage, or even location to find information.
Chicago-area 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 the 2026 Bank of America Chicago Marathon while pushing his 17-year-old son, Logan, as a para-athletics duo.
Chicago-area 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 the 2026 Bank of America Chicago Marathon while pushing his 17-year-old son, Logan, as a para-athletics duo.
Parent of an 28-year-old daughter with Angelman syndrome, Robin Wilkerson discuss the importance of community and how to support adults.
Parent of an 28-year-old daughter with Angelman syndrome, Robin Wilkerson discuss the importance of community and how to support adults.
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 disability world inspired her to help other families access financial assistance for therapies, adaptive equipment, and more.
Together, they discuss how Support Now’s all-in-one platform simplifies fundraising and connects families to thousands of verified grants, so no one has to face financial barriers alone. Whether you’re just beginning your journey or searching for better resources, this conversation is filled with encouragement, practical advice, and proof of the strength found in community.
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 disability world inspired her to help other families access financial assistance for therapies, adaptive equipment, and more.
Together, they discuss how Support Now’s all-in-one platform simplifies fundraising and connects families to thousands of verified grants, so no one has to face financial barriers alone. Whether you’re just beginning your journey or searching for better resources, this conversation is filled with encouragement, practical advice, and proof of the strength found in community.
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 for modernized healthcare policies, better access to treatment, and how collaboration across patient groups and policymakers can help make life-changing therapies available to all.
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 for modernized healthcare policies, better access to treatment, and how collaboration across patient groups and policymakers can help make life-changing therapies available to all.
Dr. Ron Thibert, ASF Clinician at Massachusetts General Hospital, discusses everything families need to know about seizures in Angelman syndrome.
Dr. Ron Thibert, ASF Clinician at Massachusetts General Hospital, discusses everything families need to know about seizures in Angelman syndrome.
Fathers discuss everything there is to know about being a dad to a child with Angelman syndrome.
Fathers discuss everything there is to know about being a dad to a child with Angelman syndrome.
In this previously recorded conversation, listen to medical experts answer commonly asked questions about medical care.
In this previously recorded conversation, listen to medical experts answer commonly asked questions about medical care.
Kathryn Ely, ASF Family Resource Director, sits down with Dr. Christopher Keary of Massachusetts General Hospital to discuss anxiety and challenging behaviors in adults with Angelman syndrome. Dr. Keary shares insights on recognizing anxiety, understanding the causes of challenging behaviors, managing transitions and separation anxiety, and using communication tools and behavioral strategies to support emotional well-being. He also discusses when medications may be helpful and answers questions from families about food-seeking behaviors, sensory needs, residential living and more.
Kathryn Ely, ASF Family Resource Director, sits down with Dr. Christopher Keary of Massachusetts General Hospital to discuss anxiety and challenging behaviors in adults with Angelman syndrome. Dr. Keary shares insights on recognizing anxiety, understanding the causes of challenging behaviors, managing transitions and separation anxiety, and using communication tools and behavioral strategies to support emotional well-being. He also discusses when medications may be helpful and answers questions from families about food-seeking behaviors, sensory needs, residential living and more.
In this previously recorded webinar, listen to an “ask all, tell all” session with four Angelman syndrome clinical experts.
In this previously recorded webinar, listen to an “ask all, tell all” session with four Angelman syndrome clinical experts.
Christopher Keary, MD, Behavioral Director at the MGH Angelman Syndrome Clinic, and Cesar Ochoa-Lubinoff, MD, MPH, ASF Clinic Director at Cedars-Sinai, offer valuable insights on evaluation, management, and recommended treatment options for unique and challenging behaviors in Angelman syndrome.
Christopher Keary, MD, Behavioral Director at the MGH Angelman Syndrome Clinic, and Cesar Ochoa-Lubinoff, MD, MPH, ASF Clinic Director at Cedars-Sinai, offer valuable insights on evaluation, management, and recommended treatment options for unique and challenging behaviors in Angelman syndrome.
