Foundation for Angelman Syndrome Therapeutics

Foundation for Angelman Syndrome Therapeutics FAST is the leading patient advocacy organization working to cure Angelman syndrome. FAST reserves the right to modify the guidelines, if needed. No advertising.

Our goal is to drive forward transformative research and development programs for those living with Angelman syndrome—regardless of age or genotype. Page Rules:
Thank you for your interest in the Foundation for Angelman Syndrome Therapeutics (FAST). FAST was founded with a single, critical mission: to cure Angelman syndrome. The organization, founded in 2008, is the largest non-governmental funder

of Angelman syndrome research, and today has a global presence. We designed this page as a platform to share research, resources, and information to our Angelman syndrome community and those interested in supporting our mission to cure AS. We have outlined community guidelines to ensure that conversations remain respectful and are aligned to Facebook’s official terms of use and community standards. Your acceptance of these terms is made by the use of this page. To ensure that this page remains a positive resource, we have developed the following page rules. These rules are guidelines for comments on our page, and we reserve the right to delete any comments or threads that violate these rules:

1. Be kind and courteous. We're all in this together to create a positive, informative, and respectful environment. Healthy debates are natural, but kindness is required.

2. No disrespectful comments. Bullying of any kind isn't allowed and degrading comments will not be tolerated. Do not post profane, defamatory, offensive or violent language.

3. Do not share personal and private information. This is a public page and information that is shared will be publicly accessible.

4. Don’t use this page for advertising your or someone else’s business, page or website.

5. Do not disclose confidential, nonpublic or proprietary business information that may compromise the confidentiality and security of FAST or any other person or company.

6. Do not post attacks or negative comments regarding groups. Any comments meant to harass, disparage, threaten or abuse an individual will be removed. FAST will do its best to respond to any questions or concerns in a timely fashion; however, at times, FAST may choose to respond privately or not to respond at all.

We are excited to welcome new leadership and new voices to the FAST Action Council! Beth Phillips-Synk is stepping into ...
09/06/2026

We are excited to welcome new leadership and new voices to the FAST Action Council!

Beth Phillips-Synk is stepping into the role of Chair. Beth succeeds Julie Renner, who will remain an active member of the Council. We’re grateful to Julie for her leadership over the past two years and excited for Beth to take the FAC forward.

We are also thrilled to welcome Roy Phillips, Sara Gainey, and Samantha Eisenhauer as the Council’s newest members who will bring their experience, energy and ideas to advancing FAST’s work and engaging the Angelman syndrome community. We are grateful to exiting members Todd Werner, Xiaowei Sun, Johnna Webb, and Sue Edberg for their leadership and service they have given to the Council over the years.

Please help us give Beth, Roy, Sara and Samantha a warm welcome!

We have just learned that the phase 3 Aspire study for GTX-102 (apazunersen) in Angelman syndrome did not achieve the pr...
09/02/2026

We have just learned that the phase 3 Aspire study for GTX-102 (apazunersen) in Angelman syndrome did not achieve the primary endpoint of change from Baseline in Bayley-4 cognitive raw score nor the key secondary endpoint of net response in Multidomain Responder Index (MDRI).

As a community, we are disappointed by this news. Although this outcome is not what any of us hoped for, it does not change our commitment to helping our loved ones living with AS – a goal we share with the entire Angelman syndrome community around the world.

Clinical research is only possible because families are willing to step forward. Your contribution to this field is profound, and we are deeply grateful.

We have requested a community webinar from Ultragenyx, and will release any related information as soon as we have it.

➡️ If you are currently participating in an Ultragenyx clinical trial, please contact the physician who leads the trial (PI) with any questions and to discuss next steps.
➡️ If you have questions about the trial and this data, please contact [email protected].

Read the press release: https://buff.ly/N6fpbSN

Ionis has shared a letter to the Angelman syndrome community with an important update on the design of CHAMPION, their p...
09/02/2026

Ionis has shared a letter to the Angelman syndrome community with an important update on the design of CHAMPION, their phase 3 clinical trial for ION582 (obudanersen) in people with Angelman syndrome due to UPD or ICD.

They are actively preparing to initiate the CHAMPION study. Eligibility criteria are available on clinicaltrials.gov; additional details, including study locations, will be updated as they become available.

Read the letter: https://bit.ly/IONIS-CHAMPION-Letter
View study on clinicaltrials.gov: https://clinicaltrials.gov/study/NCT07782827

Ultragenyx released their Summer 2026 Angelman Syndrome Community Newsletter which includes updates on their investigati...
08/31/2026

Ultragenyx released their Summer 2026 Angelman Syndrome Community Newsletter which includes updates on their investigational clinical trials, insight on an Angelman Syndrome (AS) Caregiver Leadership Council (CLC) meeting, and more.

Read the newsletter: https://bit.ly/UGX-Newsletter-Aug-2026

Honor Your Loved One at This Year’s FAST Gala 💙 This is your last chance to register for early bird perks for the 2026 F...
08/30/2026

Honor Your Loved One at This Year’s FAST Gala 💙

This is your last chance to register for early bird perks for the 2026 FAST Global Science Summit & Gala. Register by August 31 to have your loved one featured in this year’s Gala video, one of the most powerful moments of the entire weekend.

Plus, early registrants will be entered to win complimentary hair or makeup in the FAST Gala Beauty Room!

Don’t miss the deadline: cureangelman.org/summit

We are incredibly grateful for the longtime supporters who continue to show up year after year for the Always Having Fun...
08/28/2026

We are incredibly grateful for the longtime supporters who continue to show up year after year for the Always Having Fun Foundation Hendu's Golf Classic.

This year was especially tough for the Henderson Family to juggle the event planning with a busy schedule. Luckily, they have great partners and friends that share a love for Chase, their dad, or their family, so they can always rely on them to show up.

Thank you to Trent and your family, and the organizers who brought this day together. Your dedication to honoring Chase, carrying forward your father’s legacy, and supporting Angelman syndrome research is truly inspiring.

Trent has been hosting this golf tournament for 9 years now! One piece of advice Trent gives families interested in fundraising is:

"If you feel the passion and cause enough, and others around you care for you, they will share your passion and be supportive. But it must be authentic. And it will take time for that support to grow."

Let's turn your passion into something meaningful - learn ways on how you can fundraise for FAST: https://connect.cureangelman.org/helpfund2x/

Chloe, who lives with Angelman syndrome, has always had a way of pulling people in, even strangers who do not know her s...
08/21/2026

Chloe, who lives with Angelman syndrome, has always had a way of pulling people in, even strangers who do not know her story yet. Her parents, Laura and Trevor, wanted to build something around that, creating a day that could bring people together in her honor.

This past June, the Chloe's Spark Foundation held its first Chloe’s Spark Golf Scramble in Fergus Falls, Minnesota. Chloe helped shape the day around some of her favorite things: music, bubbles, balloons, and her grandmother’s homemade chocolate chip cookies, which she handed out herself.

And so many people showed up. Sponsors, donors, golfers, local businesses, and people who had never met Chloe came together to raise over $55,000 in the event’s first year.

Chloe’s mom put it simply: “Take the spark of hope and resilience and make your own flame for good. Let that flame grow in your homes, your neighborhoods, and your hearts.”

Thank you to the Fergus Falls community for showing up for Chloe and helping turn one family’s idea into an incredible first-year impact: https://cureangelman.org/articles/chloes-spark-golf-scramble-angelman-syndrome

In an effort to become more accessible to participants in different geographic locations, the Angelman Syndrome Natural ...
08/19/2026

In an effort to become more accessible to participants in different geographic locations, the Angelman Syndrome Natural History Study research team has begun conducting in-person visits outside of our permanent study sites. From Tuesday, November 3rd to Wednesday, November 4th, 2026, you can find us at the venue where the FAST Global Science Summit in Orlando, FL will be held!

What you can expect from an off-site study visit:

∙ During your in-person visit in Orlando, a psychologist will conduct a developmental assessment of your loved one with AS.
∙ Before or after your in-person visit, we may meet with you virtually to gather a medical and developmental history and complete a set of questionnaires to assess the communication, behavior, and anxiety of your child with AS.
∙ A physical and neurological exam may also be completed as time and circumstances allow.

Whether you are scheduling a follow-up study visit or enrolling as a new participant, the Angelman Syndrome Natural History Study Research Group would be excited to see you through an off-site research visit.

Questions or interested in scheduling? Contact Lexi at [email protected] or 617-355-2030.

Don’t Miss the Opportunity to Honor Your Loved One at this year’s FAST Gala 💙 Register in-person or virtually by Augus...
08/18/2026

Don’t Miss the Opportunity to Honor Your Loved One at this year’s FAST Gala 💙

Register in-person or virtually by August 31 so your loved one is featured in our powerful Gala video. This meaningful tradition celebrates the individuals at the heart of this community and the progress we are making together.

💋💄 Plus, early bird registrants will be entered for a chance to win a complimentary hair or makeup service in the FAST Gala Beauty Room!

Register today: https://cureangelman.org/summit

For years, co****le was a favorite activity for the Ciotola family when friends and neighbors got together. So, when the...
08/14/2026

For years, co****le was a favorite activity for the Ciotola family when friends and neighbors got together. So, when they started thinking about a fundraiser, it felt like a natural place to start.

That idea became For the Love of Linc, a community co****le tournament inspired by their 4-year-old son Lincoln, who lives with Angelman syndrome.

The event raised $8,000 in its debut year, but the impact went beyond the dollars raised. Family, friends, local businesses, and even complete strangers showed up to support Lincoln and the Angelman syndrome community.

Thank you to everyone who made the first For the Love of Linc such a meaningful day.

Read how a backyard tradition became a day of generosity, connection, and hope: https://cureangelman.org/articles/for-the-love-of-linc-co****le-fundraiser

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