We are all parents of children with Angelman syndrome, and we’re standing by to answer questions and assist you. Please follow these steps:
1. REGISTER WITH FAST
Receive access to all of our resources, and stay informed about research, clinical trials and events. There is no membership fee or commitment.
2. TALK TO PAULA
Paula Evans founded FAST in 2008 after doctors told her there was no hope for her daughter who has AS. She likely can answer any question you have.
3. EDUCATE YOURSELF
Browse our website, blog, and social media sites to arm yourself with information. Learn more about Angelman syndrome, your child’s diagnosis, questions to ask your doctor, therapies and much more.
You Are Not Alone
The feeling of isolation at the time of diagnosis is almost universal among parents. Sometimes, the best way to overcome this feeling and gain understanding is to hear from those who’ve been there before. Connecting with others who share the same rare experience with Angelman syndrome can be helpful when you’re ready. In the meantime, we asked parents of children with Angelman syndrome to share what they wish they had been told as a parent whose child was just diagnosed.
Dear Newly Diagnosed Parent, I remember the day my 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.
When we first learned that Olivia had Angelman syndrome, I wish I had known that the diagnosis and description are much scarier than our usual everyday reality. The diagnosis is very hard to hear, but you’ll form systems and find things to make it all easier to handle.