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.
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.
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.
In this previously recorded conversation, listen to a Q&A moderated by Dr. Elizabeth Jalazo about exciting clinical trial news.
In this previously recorded conversation, listen to a Q&A moderated by Dr. Elizabeth Jalazo about exciting clinical trial news.
Angelman mom, Lisa Jamieson from Walk Right In Ministries, a faith-based organization that supports caregivers, joins CEO Amanda Moore to discuss Lisa’s personal experiences as a caregiver and insights on supporting the mental wellbeing of those supporting loved ones with Angelman syndrome.
Angelman mom, Lisa Jamieson from Walk Right In Ministries, a faith-based organization that supports caregivers, joins CEO Amanda Moore to discuss Lisa’s personal experiences as a caregiver and insights on supporting the mental wellbeing of those supporting loved ones with Angelman syndrome.
