Foundation for Angelman Syndrome Therapeutics

Home
United States
Austin, TX
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.
(208)

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.

09/29/2025

Have an upcoming October birthday? Give your day meaning by helping fund Angelman syndrome research through a Facebook fundraiser!

Here's how:
• Search for "Fundraisers" in Facebook search.
• Tap the Raise Money button and then search for Foundation for Angelman Syndrome Therapeutics.
• Set your goal and end date.
• Select Create, then invite friends and share to your feed and Stories.

Your fundraiser doesn’t just “raise awareness.” It funds research, data, and the next step toward effective treatments. Let your birthday fuel a cure with FAST!

09/25/2025

On March 5, Angelman syndrome advocates from around the US gathered for the 2025 AS Congressional Advocacy Day in Washington, DC. Parents, grandparents, and siblings met with Congressional staff to share our top policy priorities.

Together, we emphasized the importance of caregiving legislation, protecting access to Medicaid, and securing research funding.

Despite the many political curveballs this year, Angelman advocates have demonstrated impressive effectiveness. All three Angelman syndrome-specific fiscal year (FY) 26 appropriations requests have been recognized by Congress—a significant achievement.

Learn more: https://buff.ly/WnGF53m

09/23/2025

The Harper’s Hope Golf Outings have become a cornerstone of community fundraising for Angelman syndrome research. For the past 5 years, the Webb family has hosted two golf outings, every year, and that is just incredible. 🏌️‍♀️ 🏌️‍♂️

The success of Harper’s Hope is a direct result of the love and commitment of Harper’s family, along with the incredible network of volunteers, sponsors, and players who return year after year. 🫶

Read more: https://buff.ly/DOX4jyg

09/22/2025

📣 𝐓𝐡𝐫𝐞𝐞 𝐢𝐦𝐩𝐨𝐫𝐭𝐚𝐧𝐭 𝐭𝐡𝐢𝐧𝐠𝐬 𝐭𝐨 𝐤𝐧𝐨𝐰 𝐭𝐨𝐝𝐚𝐲:

1️⃣ 𝐅𝐚𝐬𝐭 𝐓𝐫𝐚𝐜𝐤 𝐃𝐞𝐬𝐢𝐠𝐧𝐚𝐭𝐢𝐨𝐧
MavriX Bio announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to MVX-220, an investigational adeno-associated virus (AAV) gene therapy for the treatment of Angelman syndrome.

Read the press release: https://www.prnewswire.com/news-releases/mavrix-bio-receives-fda-fast-track-designation-for-mvx-220-for-treatment-of-angelman-syndrome-302562593.html

2️⃣ 𝐍𝐞𝐰 𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐓𝐫𝐢𝐚𝐥
The Phase 1/2 Clinical Trial (ASCEND-AS) to study of the safety and efficacy of MVX-220 is now listed on ClinicalTrials.gov: NCT07181837 https://clinicaltrials.gov/study/NCT07181837

3️⃣ 𝐂𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲 𝐖𝐞𝐛𝐢𝐧𝐚𝐫
Co-hosted by FAST and ASF on October 9, 2025 at 1 p.m. ET, join for information about the upcoming trial of MVX-220. MavriX Bio will provide a summary of the trial design, requirements, and enrollment criteria.

Register: https://us02web.zoom.us/webinar/register/WN_YgtRsvq6QTWNgs4sSW7yxA

09/20/2025

💙Are you a primary caregiver of a child or adult living with Angelman syndrome? Researchers at Duke University want to hear from you!

Funded by FAST, researchers are conducting an online survey to learn from you what is a meaningful change in communication ability using the ORCA measure that was designed based on caregivers like you.

How does it work?
• Complete a brief eligibility survey: https://redcap.duke.edu/redcap/surveys/?s=PXJRNY839X8DFHRK
• If you are eligible and decide to participate, you will then complete an online survey about your child’s communication abilities

Additional Information
• Participants will receive a $25 gift card for completing the survey
• The survey takes 30-45 minutes to complete
• We recommend completing the survey on a laptop, desktop computer, or tablet to view the questions optimally
• No treatments will be provided or tested in this study
• Participants must be fluent in English to participate and live in the United States, Canada, Australia, or the United Kingdom

09/19/2025

At just 5 years old, Sutton inspires everyone around her with her strength, joy, and determination. 💙

This summer, her uncle Joe and the Sutton Strong community came together for the 5th annual Joe Bologna’s Charity Golf Outing, raising an incredible $36,000 for FAST’s research efforts.

Families like Sutton’s give us the reason to keep pushing. With every outing, every team, every swing of the club, we get one step closer to a cure for Angelman syndrome. ⛳✨

Read more: https://buff.ly/vJocPmf

09/18/2025

On July 4, the One Big Beautiful Bill Act became law. Major Medicaid changes start in 2027 and will vary by state.

ASF and FAST breaks it all down for the community – what could change, what remains, and what to do now.

Read more: https://buff.ly/RfKo53o

09/17/2025

✨𝑵𝒆𝒘 𝒓𝒆𝒔𝒆𝒂𝒓𝒄𝒉 𝒂𝒍𝒆𝒓𝒕!✨

FAST-funded research points to a brainwave signal called peak alpha frequency (PAF) that may show early brain response to treatment in Angelman syndrome, before everyday changes are easy to see.

💙It doesn’t change care today, but it can help studies learn faster and make better decisions.

https://cureangelman.org/articles/reading-the-brains-signals-to-speed-better-treatments-for-angelman-syndrome

09/16/2025

The Global Science Summit weekend agenda is now live!

Why you should attend this year: The FAST Global Science Summit moves the field because it centers families and makes the science usable. This year tightens the vision for what is next and gives you practical steps for today.

Expect clear explanations of where the science is headed, honest conversation about trials and timing, and resources you can start using the moment you get home. Most of all, you will get the connections that turn information into action, so you leave with a plan you believe in.

➡️ Registration is open!
⌛ Discount hotel pricing ends on October 10.

Don’t miss the biggest Angelman syndrome event of the year: cureangelman.org/summit

09/12/2025

Summer was ending in August but the fundraising events to benefit FAST were going strong!

⭐ For the 5th year in a row, Harper's Hope and the Webb Family hosted their 2nd golf tournament of the season in Owensboro, KY
⭐ Joe Bologna's 5th Annual Charity Golf Outing brought together golfers from around Michigan to play in honor of Sutton, who lives with AS.
⭐ Over 190 guests gathered to -AS in Minneapolis to play, shine, and unwind for Angelman syndrome!

Events like these fuel the AS Drug Development Pipeline and we are so grateful for everyone who chipped, putted, and -AS in August to support FAST.

09/09/2025

Ionis Pharmaceuticals, Inc. today announced that it has received U.S. FDA Breakthrough Therapy Designation for ION582, as a treatment for Angelman syndrome.

According to the US FDA, a “Breakthrough Therapy designation is a process designed to expedite the development and review of drugs that are intended to treat a serious condition and preliminary clinical evidence indicates that the drug may demonstrate substantial improvement over available therapy on a clinically significant endpoint(s).”

Read the press release: https://buff.ly/l567Noi

Learn more about the Breakthrough Therapy designation: https://buff.ly/0fPWzrk

09/07/2025

Grandparents are more than family.
You are living proof that love stretches across generations.
You carry hope when days are hard.
You give love without condition.
You inspire us to keep fighting for the future your grandchildren deserve.

💙 Happy Grandparents Day, we celebrate you with gratitude and love.

Address

Austin, TX

Telephone

+16308503278

Website

http://www.cureangelman.org/

Alerts

Be the first to know and let us send you an email when Foundation for Angelman Syndrome Therapeutics posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.