Foundation for Angelman Syndrome Therapeutics

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Foundation for Angelman Syndrome Therapeutics

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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.

10/24/2026

LAST CHANCE: Find your people. Bring your questions. Leave feeling informed, connected, and supported. 💙

Whether you’re looking for answers, new friendships, or a renewed sense of energy, there’s a place for you here.

Register by October 27 and be part of a weekend to remember: https://cvent.me/gq0V3w

10/23/2026

Rain couldn’t dampen this community’s spirit! 💙

A huge thank-you to the Granville Angels Foundation for hosting its annual Co****le for a Cause fundraiser! Despite a downpour that lasted throughout the event, approximately 150 people—including 28 teams, plenty of spectators, and seven Angelman syndrome families—showed up to make a difference.

Together, they raised more than $34,000! 🎉

To the Granville Angels Foundation and everyone who braved the rain: thank you for showing what’s possible when a community comes together.

10/16/2026

How do we make sure the patient voice helps shape the future of rare disease drug development? That question is especially timely.

On Wednesday, the FDA announced its new Rare Disease Framework Initiative, which includes a commitment to incorporating patient perspectives earlier and at key milestones throughout drug development and review.

Today, FAST Chief Science Officer Dr. Allyson Berent will join a national discussion focused on exactly that challenge: understanding where patients have a voice in medical product development and how their involvement can be strengthened.

The meeting, Patient Voice in Rare Disease Medical Product Development, is being convened by the Reagan-Udall Foundation for the FDA, in collaboration with the FDA.

For FAST, this is an opportunity to share lessons from Angelman syndrome, where families have helped shape research priorities, clinical trial readiness, and the understanding of what meaningful treatment outcomes look like.

As approaches to rare disease drug development evolve, the experiences of patients and families are essential to getting them right.

Join the conversation virtually today, October 16, from 1–5 p.m. ET.: https://reaganudall.org/news-and-events/events/patient-voice-rare-disease-medical-product-development

10/13/2026

Heading to Orlando for the 2026 FAST Global Science Summit & Gala? Don’t wait! 🌴

Our discounted hotel rates close tomorrow, October 14, and some nights are already sold out. Book your stay before the deal is gone!

Quick booking tips:

📅 Search only within November 4-7. Dates outside that range may show no availability.
🔍 Can’t find a discounted room? Check the secondary hotel block linked on the booking page.
🛏️ Need two reservations? No problem! You’ll stay in the same room for your full stay.

Reserve your room today: https://www.hyatt.com/en-US/group-booking/MCORO/G-FAST

10/09/2026

Yesterday, ASF and FAST hosted a webinar with Ultragenyx after the announcement that their phase 3 trial for GTX-102 (aspire) did not meet primary or key secondary endpoints.

The webinar recording is now available: https://youtu.be/Jl43UtOVFm4

10/07/2026

Last call for 2026 FAST Global Science Summit & Gala hotel rooms!

If you are planning to join us in Orlando, book your hotel room now before they sell out. Don’t wait!

A few things to know before you book:

📌 Search only within November 4-7. Dates outside that range may show no availability.
📌 If any night is unavailable at the discounted rate, use the secondary hotel block linked at the top of the booking page.
📌 You may need to make two reservations, but you will keep the same room for your full stay.

Book now at https://www.hyatt.com/en-US/group-booking/MCORO/G-FAST

10/05/2026

In September, Ultragenyx announced their phase 3 trial for GTX-102 (Aspire) did not meet primary or key secondary endpoints.

To learn more, join Ultragenyx on a community webinar hosted by ASF and FAST on Thursday, October 8, 2026 at 2:00pm EST. Submit your questions and register below.

Webinar registration: https://bit.ly/UGX-Webinar-Oct-2026

10/04/2026

Big news for the Angelman community! 🎉

After a year of major changes, the refreshed Global Angelman Syndrome Registry (GASR) is now live!

The GASR team has transformed the Registry from a static database into a forward-thinking technology platform, with more than 12 months of enhancements already planned for families, researchers and clinicians.

The goal: help us better understand Angelman syndrome, support research, prepare for future therapies and create real value for families.

Explore the new Registry today at https://www.angelmanregistry.info/

10/03/2026

The science at the FAST Global Summit makes more sense when you understand your loved one's genotype. Before you head to Orlando, schedule a free, private, one-on-one appointment with Niki Armstrong, FAST's genetic counselor specializing in Angelman syndrome.

Whether you’re newly diagnosed, working through a complex genetic report, or just want a refresher, Niki will explain it all in everyday, clear language. No question is too basic. You’ll arrive ready to follow the presentations, ask the questions that matter to your family, and get the most out of every session.

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

10/02/2026

MavriX Bio announced that the FDA has granted Rare Pediatric Disease Designation (RPDD) to its investigational gene therapy, MVX-220. Rare Pediatric Disease Designation is granted by the FDA to therapies intended to treat serious or life-threatening diseases that primarily affect individuals from birth through 18 years of age and affect fewer than 200,000 people in the United States.

This designation recognizes both the significant unmet medical need for individuals living with Angelman syndrome and the potential of MVX-220 as a one-time, gene replacement approach to treatment.

Read the press release: https://www.prnewswire.com/news-releases/mavrix-bio-announces-fda-rare-pediatric-disease-designation-for-investigational-mvx-220-for-the-treatment-of-angelman-syndrome-302894995.html

Register for the Global Science Summit to hear the latest updates on MVX-220.

Register: cureangelman.org/summit

Address

Austin, TX

Telephone

+16308503278

Website

http://www.cureangelman.org/

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