About

What is Angelman Syndrome?

Angelman syndrome (AS) is a rare neurogenetic disorder that affects approximately one in 15,000 people – approximately 500,000 individuals worldwide. Children and adults with AS typically have balance issues, motor impairment and can have debilitating seizures. Some individuals never walk. Most do not speak. Disruptive sleep also can be a serious challenge to the individual and caretaker(s).

As of July 2022, there are 157 people with a diagnosis of Angelman syndrome living in Minnesota.

To dive deep into the science of Angelman syndrome, causes, genetics, hope for a cure, visit www.cureangelman.org

Adult Friendly Explanation

Kid Friendly Explanation

Angelman Syndrome's Impact on Our Family

The good:

His smile & laughter brightens anyone's day
He is able to walk so he can enjoy a lot of activities similar to his typical peers
Seeing him socialize with friends, family, and strangers
Watching him work hard, persist, and show creativity in order to navigating the world with his setbacks

The not so fun:

Trying to help him when he is crying or appears hurt and he cannot tell us what his needs are
The daily reminders when we see how far William is behind compared to his typical peers (cognitively, motor development)
The additional advocacy (and sometimes hoop jumping) needed to support his special education, personal safety, and medical needs

How we navigate:

We ask for help from our family, friends, and AS community
We fundraise, bring awareness, and fight for a cure
We keep a positive attitude celebrating the successes that William achieves everyday, big and small

What a cure would mean for us:

Freedom from the unknown, the anxieties, and worries that come with having a non-verbal and developmentally delayed child
Confidence that William can live an independent life and the burden will not fall on his brother to support him