For Families

Dear Newly Diagnosed Parent,

I remember the day my then 14-month-old son Orion was diagnosed with Angelman syndrome – devastating, crushing, hopeless. I heard words that no parent ever imagines hearing about their child.
This is a point/counterpoint 4 years after diagnosis that I hope will give you hope for a future – not at all as you expected – but richer than you could ever imagine.
“Your son has Angelman syndrome.”
I had never heard of that before diagnosis day.
“He will never talk.”
Orion is 5, and he has five spoken words. He uses his voice and gestures to communicate. He also uses his AAC (augmentative and alternative communication) device, which is not his preference, however, his language continues to grow and his communication abilities are maturing.
“He will probably walk … eventually.”
Orion started walking at 19 months. He started running at 3 years old. He is now 5 years old and he is able to safely navigate our treacherous stairs unassisted, alternating his feet going up and coming down. He is also doing wheelbarrow, walking on his hands, up those same steep stairs, which would be hard for any 5 year old to do!
“He will be severely intellectually disabled.” 
Orion understands everything, responds appropriately when he wants, and continues to amuse us with his wit, intelligence and charm.
“He will continue to have seizures.” 
We have seizures under control thanks to neurofeedback and the Low Glycemic Index Treatment diet.
“He will never have a job.” 
He is always finding creative solutions to problems. I think he may be an engineer … or a male model because he is incredibly handsome!
“He will have problems learning even the simplest of tasks.” 
He was potty trained at 2 years old. I know many neurotypical boys who aren’t potty trained at that age. 
“He will need 24-hour-care for the rest of his life.” 
That is already not true.
Orion is not his diagnosis. He is very capable. He works really hard, and we push him even harder. His smile is magnetizing, and everyone adores him.
There is hope, there is always hope!
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Amelia, an Angelman parent just like you

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The Importance of Community

For families touched by Angelman syndrome, the community can be a lifeline. The Angelman family will support you in difficult times and celebrate your hard-earned wins. We share a common vision, that soon there can be a cure for all ages. Share to help raise awareness on the importance of community. International Angelman Day is celebrated annually on February 15.

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Newly Diagnosed?

Diagnosis day brings a flood of questions. Have no fear. You are now part of our FAST family: a network of parents, researchers, clinicians, and other professionals who are committed to Cure Angelman Now. Here you will find a supportive community, answers to each of your questions, and a wealth of resources to help you manage your child’s daily needs. Please click on the button for the steps to take as a newly diagnosed parent.

Angelman Syndrome Clinics

The 15q Clinical Research Network is a comprehensive clinical network system. Each clinic has its own unique expertise and specialized care available. Individuals with Angelman syndrome will have access to a variety of professionals, including, but not limited to:

  • Clinical geneticist
  • Neurologist
  • Psychiatrist
  • Psychologist
  • Speech Language Pathologist
  • Physical/Occupational Therapist
  • Genetic counselor
  • Social worker
  • Nutritionist

For more information, or to find a clinic, please visit 

Global Angelman Registry

The Global Angelman Syndrome Registry is a project designed to empower individuals diagnosed with Angelman syndrome, their families and those working towards research and treatments.

As caregivers, your firsthand knowledge informs researchers and drug developers to grasp the profound impact of AS on individuals’ lives across all ages and genotypes, ensuring our experiences are considered when measuring if a drug makes a meaningful change. This knowledge also guides the identification of suitable target areas for potential therapies and informs the design of clinical trials. Data drives all aspects of drug development, and the more we have, the more we can inform those who are making decisions on behalf of your family. Together, we drive progress and make a lasting impact.

Resource Library

Transitioning to adulthood for individuals living with Angelman syndrome is not a one size fits all process. We at FAST hope you can use this toolkit as a starting point to help break down the tasks and make this milestone in your child’s life go as smoothly as possible. Download the toolkit to get started today. 
Angelman Academy provides carefully curated resources, community connections, and expert taught courses for parents, caregivers, and professionals who love, care for, and work with individuals with Angelman syndrome. 
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Help spread awareness for Angelman syndrome. Personalize your own Angelman syndrome Fact Card to share with others. 

Friend of P2P@180Parent to Parent USA - a national organization that supports families of individuals with disabilities and special health care needs with best practices on one to one emotional support.


This downloadable form is a tool to be completed by you and your child’s physician. It provides you the ability to demonstrate the need for particular supports or services in a school setting. 
Many individuals with Angelman syndrome experience seizures. It is helpful to have a Seizure Action Plan and communicate that to your loved one’s care team. Read more about Seizures and Action Plans here.

Standards of care in the management of AS are keys to ensure optimal care at a critical time when new disease-modifying therapies are emerging. This document is a framework for providers of all familiarity levels.

The safe transportation of a student with exceptional needs requires a plan that considers and adapts the transportation services to the individual needs of the student, to be documented in the Individual Transportation Plan and should be discussed during the Individualized Education Plan and included as part of the IEP as a related service. Download the protocol today. 

The David Family

Our journey to diagnosis begins much like many other stories in the Angelman community. Colin, our first born, arrived at 38 weeks after an uneventful pregnancy. He was long, lean, and had a headful of beautiful blond hair. We were discharged from the hospital and eager to settle in as a new family of 3.

 Connect on Social Media

Join the official community Facebook group for FAST to interact with other community members.

This group is focused on giving immediate, clear and useful information related to the fast-growing universe of clinical trials for Angelman syndrome.

Follow us on your preferred platform to stay up to date on the latest news, events, and community engagement opportunities.

Connect with the FAST team: Click Here

Helpful Resources

As diverse as our Angelman community is, we are all united in one goal: a better future for our children. FAST is committed to bringing life-changing treatments to all individuals with Angelman syndrome, but we need your help!
As diverse as our Angelman community is, we are all united in one goal: a better future for our children. FAST is committed to bringing life-changing treatments to all individuals with Angelman syndrome, but we need your help!
Each year at FAST’s Annual Summit & Gala, FAST hosts a wide array of educational workshops. These seminars can be replayed and used as a resource for parents, caregivers, therapists and educators. The information and knowledge shared helps to improve the quality of life for individuals with Angelman syndrome – and those who care for them. Start exploring past seminars now!
Seizures are common in individuals with Angelman syndrome (AS). Approximately 85% of individuals with AS will experience seizures. Therefore, it is important to be able to recognize a seizure and have a seizure action plan with your medical provider.