Foundation for Angelman Syndrome Therapeutics

Foundation for Angelman Syndrome Therapeutics FAST is the leading patient advocacy organization working to cure Angelman syndrome. We are based in the USA with 9 global chapters around the world.
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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. FAST reserves the right to modify the guidelines, if needed. 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. No advertising. 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.

Oak Hill Bio has shared a community letter to the Angelman syndrome community with an important update on the next steps...
05/27/2026

Oak Hill Bio has shared a community letter to the Angelman syndrome community with an important update on the next steps of the development of rugonersen.

They are actively preparing to initiate the Phase 3 study in the middle of 2026. 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/OHB-May-2026
➡️ View the study: https://clinicaltrials.gov/study/NCT07605429

The second FAST LATAM Conference brought together more than 250 people in person in Mexico City, with nearly 500 more jo...
05/23/2026

The second FAST LATAM Conference brought together more than 250 people in person in Mexico City, with nearly 500 more joining virtually from across the region 🇲🇽

Over two days, families, clinicians, researchers, and advocates came together to share the latest updates in Angelman syndrome research and clinical trials while also focusing on practical conversations around care, education, and supporting loved ones living with Angelman syndrome.

A huge congratulations to the FAST Latam board and everyone who helped make this event such a success. The continued growth of the Latin American Angelman syndrome community is helping strengthen connections, increase awareness, and move progress forward across the region.

Read the full blog recap: https://cureangelman.org/articles/fast-latam-conference-mexico-city-angelman-syndrome

This Mother’s Day, we are recognizing the women who carry so much for the Angelman syndrome community, the mothers, gran...
05/10/2026

This Mother’s Day, we are recognizing the women who carry so much for the Angelman syndrome community, the mothers, grandmothers, caregivers, advocates, and loved ones who show up every day with extraordinary strength and determination. Many have become caregivers, researchers, fundraisers, and fierce advocates all at once, driven by love and hope for a better future.

You can make a meaningful impact by donating in honor of someone who inspires you. Your gift helps advance the research and progress that families are counting on.

Honor someone today: https://buff.ly/yssnL5F

Niki helps turn complex genetics into something families can actually use. As FAST’s genetic counselor, she translates t...
05/07/2026

Niki helps turn complex genetics into something families can actually use. As FAST’s genetic counselor, she translates the science and gives families the information they need to make informed decisions.

📅 Schedule your appointment today: https://cureangelman.org/angelman-syndrome-genetic-counseling

This September, Sonia and Jose will take on a 42 km, four-day hike along the Inca Trail in Peru. They are doing this for...
05/04/2026

This September, Sonia and Jose will take on a 42 km, four-day hike along the Inca Trail in Peru. They are doing this for Jack, who lives with Angelman syndrome and fills their home with laughter.

It’s a demanding, high-altitude trek, and as part of Team Kick-AS, they’re using the Run the Distance program to tie it to something bigger than the trail itself: https://give.cureangelman.org/fundraiser/7123602

This is the idea behind FAST's Run the Distance program:
▪️ You choose the goal.
▪️ You choose the distance.
▪️ You decide how to move (run, walk, bike, hike, etc.).
▪️ You decide where, whether it’s close to home or across the globe.
▪️ And you make every mile count.

Join Team Kick-AS and take on your own Run the Distance challenge, whether it’s a race, hike, ride, or something entirely your own: https://give.cureangelman.org/event/run-the-distance-with-team-kick-as/e764271

So One Day We Can Hear His Voice4 days. 42km. One mountain in Peru, for our little boy whose voice we hope to hear one day.

Earlier this week, ASF and FAST hosted a webinar focused on educating the Angelman syndrome community on Medicaid to hel...
04/30/2026

Earlier this week, ASF and FAST hosted a webinar focused on educating the Angelman syndrome community on Medicaid to help unravel the changes happening in policy and politics and empower families on how they can advocate in their state.

Check out the webinar recording, resources, and sign up to be a state advocate today!

Learn more: https://angelmanadvocates.org/medicaid

The newsletter is designed to keep families, advocates, and stakeholders informed on the latest updates across clinical ...
04/28/2026

The newsletter is designed to keep families, advocates, and stakeholders informed on the latest updates across clinical development and community engagement.

This resource aims to provide clear, accessible insights and highlight ongoing progress relevant to the AS community.

See the newsletter here: https://bit.ly/UGX-newsletter

Ionis is excited to open the first enrollment sites for REVEAL in the EU in Germany and Spain – and thanks the Angelman ...
04/27/2026

Ionis is excited to open the first enrollment sites for REVEAL in the EU in Germany and Spain – and thanks the Angelman syndrome (AS) community for its continued support.

Read the full community letter here: https://bit.ly/Ionis-Letter-EU

CAN Fundraising 2026 is underway! We are so grateful for the families & friends who hosted an event this winter – bringi...
04/25/2026

CAN Fundraising 2026 is underway! We are so grateful for the families & friends who hosted an event this winter – bringing funds and awareness to Angelman syndrome research!

🎤 Matt Goecker, family friend of the Berndt family of Wisconsin, hosted a comedy night with live music to escape the cold, in honor of Payslie and Payslie's Pals
🔵 The Synk and Foglyano families hosted their first ever major event fundraiser: Pinball with a Purpose: Immy’s International Angelman Day Bash, bringing together the community for a day of dollars raised and pinball playing in Cleveland, Ohio. Read the full recap here.
⭐ Friends of James Foundation led by the Poerio Family, hosted Ci**rs for a Cause, for a perfect way to relax, enjoy the NCAA March Madness tournament, and support AS.
🎾 The LaMura Family held the first event of their 2026 Rally for a Cure Event Series to raise funds for FAST. Join the next one near you: https://buff.ly/uV74uef

Continue the momentum and learn more about how you can fundraise in honor of your loved one living with Angelman syndrome!

🟢Start today: https://buff.ly/539FR8v

The ASF and FAST have joined more than 100 organizations in signing a letter urging Congress to pass the Lowering Costs ...
04/23/2026

The ASF and FAST have joined more than 100 organizations in signing a letter urging Congress to pass the Lowering Costs for Caregivers Act.

Studies have shown that families caring for someone with Angelman syndrome can face on average $80,000 a year in out of pocket healthcare costs. This bill expands HSAs and FSAs funds to cover dependents and other loved ones, while offering tax relief for essential care. A meaningful step toward easing the burden.

Caregivers are the backbone of our community, and ASF and FAST will continue advocating for policies that support families.

Read the letter: https://buff.ly/rPW2Uxc

04/20/2026

The FAST Global Science Summit & Gala is heading back to Orlando in 2026 – this time at a new location, the Hyatt Regency Orlando. Start thinking about your travel plans now so you can join us for a powerful weekend of science, connection, and community!

🌎 International Guests - If you live outside of the United States and will need a visa to travel to the US, please consider applying now. If you need a letter of invitation to accompany your application, email [email protected] for assistance.

⭐November 5–7, 2026
📍Orlando, Florida (new venue!)
📅Agenda:
• Thurs, Nov 5: Community Event 6pm-8pm
• Fri, Nov 6: Global Science Summit (all day)
• Sat, Nov 7: Global Science Summit (AM) and FAST Gala (PM)

For families needing financial assistance to attend, our parent/caregiver scholarship applications will open on June 1.

➡️ Learn more about our signature event at https://buff.ly/G7diCo3
➡️ Sign up for our newsletter to be notified when registration opens: https://buff.ly/oGBE9VR.

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Austin, TX

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+16308503278

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