Foundation for Angelman Syndrome Therapeutics

01/07/2026

Some of the most important advocacy work happens behind the scenes, but it directly affects families.

We’re proud to share that FAST’s Chief Operating Officer, Ryan Fischer, has been selected as a 2026 Community Congress Patient Advocacy Group Co-Chair with the EveryLife Foundation for Rare Diseases. Ryan will co-chair the Regulatory Working Group, where the focus is improving the regulatory infrastructure and advancing regulatory science for rare disease products. In plain terms: helping make sure the rules, evidence, and pathways actually work for patients, not around them.

Ryan brings more than two decades of rare disease advocacy leadership and deep experience in patient-focused drug development. He has helped co-author legislation, led several patient preference research studies, and is known for building pre-competitive collaborations that turn patient insight into evidence decision-makers can actually use.

We’re proud of what this represents for Angelman syndrome advocacy. We work alongside the Angelman Syndrome Foundation through Hope in Action to push for policy priorities for our families, and this is an important step in that work.

Want to stay connected to advocacy updates and easy actions you can take? Visit Hope in Action: angelmanadvocates.org

01/05/2026

If you love someone with Angelman syndrome, dedicate your birthday wish to fueling AS research. Start a Facebook fundraiser for FAST and turn your celebration into momentum for the next breakthrough.

Start yours in a few steps:
🔹Search “Fundraisers” in the Facebook search bar.
🔹 Tap Raise Money and choose Foundation for Angelman Syndrome Therapeutics.
🔹 Set your fundraising goal and end date.
🔹Hit Create, then invite friends and share.

Start 2026 knowing you did more than make a wish. You helped move us closer to a cure. 💙

12/31/2025

One thing you may not know about FAST is that many of the staff are parents of children living with Angelman syndrome.

It’s why FAST's mission feels personal in the best way: it keeps us close to the people this work is for.

As the year comes to a close, we wanted to thank you and share this special message, from our FAST family to yours.💙 We’re grateful not just as an organization, but as families who are living this, too.

Happy New Year!

12/30/2025

FAST and ASF have joined a powerful coalition of organizations urging Congress to pass the FY26 Defense Appropriations Act and restore full funding for the Department of Defense’s medical research programs, including the Congressionally Directed Medical Research Programs (CDMRP).

This is especially critical for the Angelman syndrome community because thanks to the efforts of our Advocates in DC, Angelman syndrome is listed as an eligible condition for federal funding through the Peer Reviewed Medical Research Program (PRMRP). Failure to pass this bill—or cuts to the funding—could mean losing hard‑won federal funding that supports AS science and future potential therapies.

By signing this letter, FAST and ASF are working to protect the progress our community has made and to keep Angelman syndrome research moving forward.

Read the letter: https://buff.ly/8nnx5Ax

12/22/2025

Ionis Pharmaceuticals has shared a letter to the Angelman syndrome community on the ION582 clinical development program. The letter covers progress on the Phase 1/2 HALOS and Phase 3 REVEAL trials, as well as the recently announced CHAMPION trial to explore ION582 in additional genotypes.

Read the letter: https://bit.ly/48WCeNK

12/21/2025

One winter night. Full courts, full hearts. More than 150 friends came together at Exmoor Country Club and raised over $72,000 to move Angelman syndrome research forward for Ryan and every person living with AS.

Learn more about what inspired this event: https://buff.ly/AZYuurP

12/19/2025

At Drexel University’s Angelman Syndrome Awareness Night, families, athletes, and fans came together to celebrate connection, community, and hope. Led by Gabe’s parents, Linda and Joe D’Orazio, the event raised awareness and support for FAST’s mission to move research forward.

Read more about this incredible partnership: https://buff.ly/wWYfUnx

12/18/2025

If you missed the 2025 FAST Global Science Summit last month, this is the catch-up you will actually want to read.

There were over 30 presentations discussing insights and updates across translational research, caregiver tools, industry updates, and more. We have summarized each presentation into bite-sized chunks to help understand what you need to know.

https://cureangelman.org/summit-2025-event-recap

12/17/2025

The Seagos proved that fundraising doesn’t have to be complicated—it just has to come from the heart. 💙 Every family can make a difference for Angelman research, one idea at a time.

Read their story: https://buff.ly/srlt3F4

12/16/2025

🧬Gene therapy is moving fast. Access is not.

A recent 60 Minutes segment on million-dollar gene therapies is a tough but important watch, because it highlights a reality rare disease families face all the time: a breakthrough can exist, and access can still be out of reach.

That gap is why advocacy is part of FAST’s work now, not later. We can help accelerate the science, but families only benefit when the systems around it are ready too, including how coverage and affordability decisions get made.

FAST is proud to partner with the Angelman Syndrome Foundation through Hope in Action to push for urgency at the FDA, clear expectations for evidence that matters to families, and policies that support real access when new therapies reach the finish line.

Want to help close the gap between breakthrough science and real-world access? Join us at angelmanadvocates.org to sign up for action alerts and learn how to join us for Advocacy Day in Washington, DC next March.

A new class of life-saving drugs is helping children who once had no hope. But some carry a price tag of millions for a single dose, and the American health ...

12/13/2025

💙 Thank you.

To everyone who has donated, started a fundraiser, shared a post, or simply told someone about Angelman syndrome: your support means more than we can say.

You are helping move science forward. You are helping researchers stay focused. You are helping families feel less alone and more hopeful about what is possible.

You are part of the work that is pushing Angelman syndrome research forward every day.

12/12/2025

Help us secure as many State Proclamations as possible before International Angelman Day on February 15, 2026.

This opportunity is a simple action you can take that can have a powerful result for the Angelman syndrome community!

🔎Find your state’s submission deadlines and request yours today: https://angelmanadvocates.org/state-proclamations