Families & Caregivers
Education, fundraising, advocacy, spreading the word: There are almost too many ways to get involved.
Rather than overwhelm you, we try to break down some broad categories here. But the bottom line is that becoming a champion can look different for everyone. Start with one of the ideas below, or send us an entirely different one by writing to us here email@example.com.
For many of us, joining this community has meant getting a fast education cutting-edge science and technology as it’s being discovered. This is no small feat, so we put together some resources to get you up to speed:
Community fundraising and private donors are necessary to drive FAST’s strategic roadmap to a cure forward.
Golf tournaments, Easter egg hunts, cook-offs, cornhole tournaments, block parties, frozen turkey bowling (who knew that was a thing?!): We have been amazed at how creative this community gets when our loved ones’ futures are at stake.
And there are many more ways to give beyond organizing events. To learn more about them all, visit us here.
"The only thing standing now between us and treatment is money. The science is here, and it’s beautiful.”
- Dr. Allyson Berent, Chief Science Officer, mother of Quincy, who lives with AS.
We need to understand how many individuals around the world are living with Angelman syndrome, along with as many details about their lives as is reasonable. Why? Because this information is critical to inform clinical trials for Angelman syndrome therapeutics.
The quickest and easiest way is to fill out our Search & Rescue form. We promise: It will only take one minute, maybe two.
Once you master that, grab yourself some snacks and tackle your entry in the deeper Global Angelman Syndrome Registry (GASR). We’ll be honest here: This one is a heavy lift. And we too have loved ones with AS, so we know that the last thing you have an abundance of in your life is extra time. We wouldn’t ask you to do it if it weren’t vitally important.
The Global Angelman Syndrome Registry (GASR) is a global initiative by parents and caregivers to drive the collection of data related to diagnosis, medical history, development, and more in a series of online modules. Identifying our global community allows each family the ability to connect with local and international families for support as well as get the latest information on therapeutic treatments and research. But more importantly, it’s an invaluable resource to advance the search for therapeutics.
The biggest event of the year—the one where researchers and pharma show off their latest news, and we show them the power and dedication of the AS community—is FAST’s Global Science Summit & Gala. Come to the next one!
There are several ways to get involved.
Feb 15: International Angelman Day
International Angelman Day (IAD) is observed on the 15th February to raise awareness worldwide for Angelman Syndrome (AS). The IAD Collective is a global family-driven, family-supported collective. We invite our community to drive this event in your own country, region, and hometown. Because this is such a rare disorder, we need everyone to help us spread the word. We want the whole world to know more about Angelman syndrome!
In order to create change, we need to develop and foster relationships with our government officials at the state and federal level.
We also need to lean on the leaders in the community to help propel forward community engagement, fundraising, and the mission of FAST.
FAST Athletes is led by high-class athletes in the Angelman syndrome community who help support the mission of FAST through various health and wellness initiatives. These amazing people bring professional expertise and experience in a wide variety of health and fitness arenas such as diet and nutrition, strength training, biking, golf, rugby, and a professional bikini competitor!
Check out our athletes on Instagram:
FAST Athletes want to connect with you to help bring awareness to Angelman syndrome and achieve your personal fitness goals.
Want to get moving? Complete the FAST Athlete 15-Day Challenge!