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.
A collection of videos focusing on various aspects of life for adults with Angelman syndrome. The playlist includes expert discussions on topics such as health management, independent living, employment opportunities, and social engagement for adults with Angelman syndrome. The series aims to provide valuable insights and resources for caregivers, families, and individuals seeking to enhance the quality of life for adults affected by this condition.
A collection of videos focusing on various aspects of life for adults with Angelman syndrome. The playlist includes expert discussions on topics such as health management, independent living, employment opportunities, and social engagement for adults with Angelman syndrome. The series aims to provide valuable insights and resources for caregivers, families, and individuals seeking to enhance the quality of life for adults affected by this condition.
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.
The Foundation for Angelman Syndrome Therapeutics (FAST) and the Angelman Syndrome Foundation (ASF) formed a strategic partnership to drive a coordinated, multi-tiered advocacy strategy to improve the lives of those affected by Angelman syndrome.
Both organizations understand the need to ensure key decision makers understand Angelman syndrome to influence and inform policy, legislation, and funding related to AS.
Please consider joining the AS Advocacy movement.
The Foundation for Angelman Syndrome Therapeutics (FAST) and the Angelman Syndrome Foundation (ASF) formed a strategic partnership to drive a coordinated, multi-tiered advocacy strategy to improve the lives of those affected by Angelman syndrome.
Both organizations understand the need to ensure key decision makers understand Angelman syndrome to influence and inform policy, legislation, and funding related to AS.
Please consider joining the AS Advocacy movement.
Staci Zimmerman, a special education specialist from the Angelman Syndrome Foundation Clinic at Children’s Hospital Colorado, discusses strategies to prepare for the upcoming school year. She provides insights and practical advice to help families and educators support students with special needs as they transition back to school.
Staci Zimmerman, a special education specialist from the Angelman Syndrome Foundation Clinic at Children’s Hospital Colorado, discusses strategies to prepare for the upcoming school year. She provides insights and practical advice to help families and educators support students with special needs as they transition back to school.
Join Amanda Griffith-Atkins, MS, LMFT for a powerful mental health seminar focused on building resilience in caregivers by becoming more compassionate with yourself! Learn valuable strategies to stay strong and balanced while caring for your loved ones.
Join Amanda Griffith-Atkins, MS, LMFT for a powerful mental health seminar focused on building resilience in caregivers by becoming more compassionate with yourself! Learn valuable strategies to stay strong and balanced while caring for your loved ones.
The session from the 2017 ASF Family Conference emphasizes the importance of building a supportive network for individuals with Angelman syndrome and their families. The discussion covers strategies for fostering community connections, accessing resources, and collaborating with professionals to enhance the quality of life for those affected by Angelman syndrome. The session highlights the collective strength and shared experiences within the Angelman community.
The session from the 2017 ASF Family Conference emphasizes the importance of building a supportive network for individuals with Angelman syndrome and their families. The discussion covers strategies for fostering community connections, accessing resources, and collaborating with professionals to enhance the quality of life for those affected by Angelman syndrome. The session highlights the collective strength and shared experiences within the Angelman community.
This session focuses on strategies for building a supportive network and planning future steps for individuals with Angelman syndrome. It offers insights into collaborating with various stakeholders, including healthcare providers, educators, and community members, to enhance the quality of life for those affected by Angelman syndrome. The presentation also discusses practical approaches to advocacy and resource development.
This session focuses on strategies for building a supportive network and planning future steps for individuals with Angelman syndrome. It offers insights into collaborating with various stakeholders, including healthcare providers, educators, and community members, to enhance the quality of life for those affected by Angelman syndrome. The presentation also discusses practical approaches to advocacy and resource development.
Eric Wright discusses navigating private insurance, government programs, and the supports set up nationally and locally for individuals with Angelman syndrome. Learn about government programs, Medicaid and beyond. Discover how to advocate for coverage and what to do when faced with rejections.
Eric Wright discusses navigating private insurance, government programs, and the supports set up nationally and locally for individuals with Angelman syndrome. Learn about government programs, Medicaid and beyond. Discover how to advocate for coverage and what to do when faced with rejections.
In this episode of the ASF Podcast, CEO Amanda Moore speaks with filmmaker Amber Sealey about her Disney+ film Out of My Mind, which highlights the journey of a young girl with cerebral palsy. They discuss the importance of disability representation in media, presuming competence in non-verbal individuals, and the realities of caregiving. Amber shares her personal connection to advocacy, the challenges of making the film, and how storytelling can amplify the voices of those with disabilities.
In this episode of the ASF Podcast, CEO Amanda Moore speaks with filmmaker Amber Sealey about her Disney+ film Out of My Mind, which highlights the journey of a young girl with cerebral palsy. They discuss the importance of disability representation in media, presuming competence in non-verbal individuals, and the realities of caregiving. Amber shares her personal connection to advocacy, the challenges of making the film, and how storytelling can amplify the voices of those with disabilities.
