It's an Angelman Parent Thing

For Parents

No matter where you are in your Angelman journey, the ASF is here for you.  The ASF has been dedicated to supporting families for over 25 years. If you have questions, we have answers or know where to direct you for answers.

Below you will find groups and resources that have been created JUST FOR YOU – a caregiver to someone with AS.

ASF Family Resource Team

The ASF Family Resource Team, a group of experts in their respective fields of education, products for AS, insurance and medicare). 

Each member of the team has a family member with Angelman syndrome.

ASF Family Champions

It’s important to connect with others who understand the joys and challenges of raising a child with AS. The ASF Family Champions are parents who have volunteered for others to reach out to ask questions, vent frustrations, share joys or just talk.

Counseling Services

The ASF offers counseling services at no charge to Angelman families in the United States for help with (but not limited to): caregiver stress, substance abuse issues, self-esteem concerns and more.

Join a Committee

Feeling like you want to get involved and do more for Angelman syndrome? Check out our list of committees and see if there is one that is right for you.

Send Encouragement

The ASF Care Committee can help brighten the day of individuals and caregivers living with Angelman syndrome. 

Get Our Emails & Texts

The ASF keeps in touch via email newsletters and text. You can select the list options that are important to you. 

Medical & Social Referrals

The ASF has partnered with Unite Us, to provide local referrals for medical and social service providers.

Checklists, Brochures and More Resources

As parents and caregivers of someone with Angelman syndrome, it’s important to educate yourself and others who are in contact with your child. Because AS is so complex and uncommon, you will hear the question, “what is Angelman syndrome?” often.  Below, are some resources that you can download for your own use, or share with others who will be working with your individual. 

Find more resources searchable by topic on the Resources page.

Newly Diagnosed

Brochure cover featuring a family with 2 boys diagnosed with AS
Welcome Brochure for
Newly Diagnosed
First 100 Days cover
First 100 Days Journey

Things to help answer, “What is Angelman Syndrome?”

Angelman brochure front image
Angelman Journey
Genetics 101
Facts about Angelman syndrome cover showing intro text and ASF logo
Facts About Angelman Syndrome - written by a pediatrician for doctors
Awareness card - Canva
Printable Card

Video created by Roche

Worksheets For the Kiddos – great for classrooms

What is AS
Fill in blanks
Word Scramble
Word Search
Wings that represent Angelman syndrome. And space to create your own wings
Create Wings
Picture of a chromosome to help facilitate the discussion of genes and Angelman syndrome
Color a gene

Tips & resources for those who care for an individual with AS

The Clinical Care Tool Kit includes:

  • Overall Standards of Care
  • Seizure Treatment Guidelines
  • Management of Nonconvulsive Status Epilepticus
  • General Anesthesia Best Practices
  • Myoclonus in AS
  • Physical Therapy and Occupational Therapy
  • LADDER Learning Network
Angelman Syndrome Clinical Care Tool Kit
Physical therapy
Physical & Occupational
Therapy Best Practices
Angelman Syndrome for Educators
AS for Educators
by Erin Sheldon M.Ed.
Writing Instructions for Students with AS cover page
Writing Instructions for Students with AS
by Erin Sheldon M.Ed.
All About Me Template
All About Me Template - Word
Symptom & Treatment Checklist for the IEP created by Lynne Bird, MD
Tips to get Medical Equipment & Supplies Paid For
by Lizzie Sordia
Medical Card template- Canva
Preparing your Individual with AS for general anesthesia
Prepare for General Anesthesia
State Insurance Guide
State Insurance Resource Guide
Standards of Care for Angelman Syndrome

AS in Adulthood

Transitioning to adulthood checklist cover
Transitioning to Adulthood
Facility tour checklist first page
Day program & long-term care facility tour checklist

Let’s Be Friends

Follow us on social media! You will stay up-to-date on events and information, and interact with the worldwide Angelman community.