Resources

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.

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Resources

Communication
Document | Printable | Video | Website
Stepping into AAC

Despite the growing amount of AAC information that is available, parents of children with very limited language struggle to support their children’s communicative development. Stepping Into AAC is a program to support your individual’s communication journey.

Stepping Into AAC

  • Introduces you to Augmentative/Alternative Communication (AAC)
  • Guides you through the early months of using new communication tools and strategies
  • Offers resources to engage school teams and other caregivers

The program is divided into 20 parts with the intention to complete one part a week. There are activities, resources and videos to guide you along the way. Our hope is that you find support and inspiration whether you are just getting started with AAC, seeking momentum or looking to learn more about AAC.

Despite the growing amount of AAC information that is available, parents of children with very limited language struggle to support their children’s communicative development. Stepping Into AAC is a program to support your individual’s communication journey.

Stepping Into AAC

  • Introduces you to Augmentative/Alternative Communication (AAC)
  • Guides you through the early months of using new communication tools and strategies
  • Offers resources to engage school teams and other caregivers

The program is divided into 20 parts with the intention to complete one part a week. There are activities, resources and videos to guide you along the way. Our hope is that you find support and inspiration whether you are just getting started with AAC, seeking momentum or looking to learn more about AAC.

Newly Diagnosed | Adults | Family Support
Group
ASF Family Champions

Free. Making connections with others in the Angelman community can be very powerful and the ASF Family Champions are available for all of these reasons and more! These fellow AS family members have volunteered to be available to other families to share their knowledge, experience and lend an ear.

Free. Making connections with others in the Angelman community can be very powerful and the ASF Family Champions are available for all of these reasons and more! These fellow AS family members have volunteered to be available to other families to share their knowledge, experience and lend an ear.

Adults
Printable | Service | Website
AS Grows Up

Introducing AS Grows Up
In January 2025, ASF published an Adult Survey. Caregivers and family members of adults with AS shared their realities including: their victories, challenges, and urgent gaps in resources and support. Now, we are taking bold action to close the gaps in essential support and expand the vital resources and services families desperately need.

Introducing AS Grows Up
In January 2025, ASF published an Adult Survey. Caregivers and family members of adults with AS shared their realities including: their victories, challenges, and urgent gaps in resources and support. Now, we are taking bold action to close the gaps in essential support and expand the vital resources and services families desperately need.

Behavior | Seizures
Video
ABC's of LGIT

Sybille Kraft-Bellamy, an LGIT expert and mother to a child with Angelman syndrome, discusses the ABC’s of implementing the LGIT diet during this webinar.

Sybille Kraft-Bellamy, an LGIT expert and mother to a child with Angelman syndrome, discusses the ABC’s of implementing the LGIT diet during this webinar.

Seizures
Video
Abnormal Movements in AS

Robert Carson, MD, PhD at Vanderbilt University discusses his research and findings on characterization and treatment of abnormal movements in Angelman syndrome.

Robert Carson, MD, PhD at Vanderbilt University discusses his research and findings on characterization and treatment of abnormal movements in Angelman syndrome.

Adults
Video
Adult Care in AS

Jessica Duis, MD, MS discusses many aspects of caring for teens and adults with AS. Topics covered are: transition of care, routine, nutrition, behavior, sleep and mobility.

Jessica Duis, MD, MS discusses many aspects of caring for teens and adults with AS. Topics covered are: transition of care, routine, nutrition, behavior, sleep and mobility.

Adults
Group | Website
Adult Housing & Champions

ASF gives families a place to begin—offering support, reassurance, and real-life examples that show what is possible. We offer ideas that are already tested by others, families don’t have to start from scratch when planning for the future.

Adult Housing Champions are caregivers who have navigated one of these situations for their loved one and are available to guide and share their experience with others.

ASF gives families a place to begin—offering support, reassurance, and real-life examples that show what is possible. We offer ideas that are already tested by others, families don’t have to start from scratch when planning for the future.

Adult Housing Champions are caregivers who have navigated one of these situations for their loved one and are available to guide and share their experience with others.

Adults
Group
Adult Siblings

Connect with other siblings, learn about available resources, hear from experts and discuss plans for long-term care for your sibling with Angelman syndrome.

There is a special relationship between individuals with AS and their siblings. It can be loving and carefree, and at other times frustrating and overwhelming. Siblings are the future caretakers of their siblings and it’s a very important role that requires support and lots of planning.

Connect with other siblings, learn about available resources, hear from experts and discuss plans for long-term care for your sibling with Angelman syndrome.

There is a special relationship between individuals with AS and their siblings. It can be loving and carefree, and at other times frustrating and overwhelming. Siblings are the future caretakers of their siblings and it’s a very important role that requires support and lots of planning.

Adults
Video
Adulthood YouTube Playlist

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.

Adults
Podcast
Adults & Caregiver Support

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.