Foundation for Angelman Syndrome Therapeutics

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 events@cureangelman.org 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.

04/19/2026

👟 Team Kick-AS is growing! And so are the opportunities to run with FAST.

This year, our runners are stepping up in some of the world’s most iconic marathons, including New York City and Tokyo.

Whether you are chasing a personal best or running your own race, there’s a place for you on our team. Dedicate your miles to fueling Angelman syndrome research. 💙

Explore upcoming races and join Team Kick-AS:
connect.cureangelman.org/jointeamkickas

04/16/2026

Play where the pros play and raise funds for a great cause on Saturday, May 2nd!

📍USTA National Tennis Center
⏰4:30-6:00pm
👯 Bring friends & family—this event is inclusive of all levels
🍕 Pizza will be served
🤝 Foundation for Angelman Syndrome Therapeutics

Rally for a Cure for Angelman Syndrome Family Tennis Event - Queens, NY

04/15/2026

Some of the most important progress in Angelman syndrome has come from scientists dedicated to solving its hardest questions.

Dr. Yong-Hui Jiang is one of those scientists.

He helped uncover the genetic cause of Angelman syndrome and develop the models scientists around the world still use today. He also continues to help drive the science forward through work focused on gene editing and new therapeutic approaches.

At FAST, we know families are not just following progress. You are living it. This Yale School of Medicine takes a deeper look at the person, persistence, and partnership behind the progress we are seeing today and the possibilities still ahead.

Yong-Hui Jiang’s research has uncovered the biology of neurogenetic disorders like Angelman syndrome and autism. His genome-editing work could lead to targeted

04/10/2026

Angelman syndrome research moves forward when the field attracts new scientific talent and those ideas get tested with rigor.

FAST is partnering with the American Society of Gene & Cell Therapy (ASGCT), a global leader in cell and gene therapy, to support early-career scientists working on Angelman syndrome through ASGCT’s Career Development Awards.

This year, three Angelman syndrome projects were selected for Career Development Awards, including two supported by FAST and one funded directly by ASGCT. What makes this cohort compelling is the range of approaches aimed at some of the hardest CNS challenges: precision gene editing, next-generation RNA therapies, and delivery strategies designed to make administration more practical over time.

Congratulations to Marco Carpenter, PhD, Children's Hospital of Philadelphia; Mark Deehan, PhD, Massachusetts General Hospital; and Xiaona Lu, MD, PhD, Yale School of Medicine.

Read the project summaries: https://cureangelman.org/articles/fast-asgct-career-development-awards-angelman-syndrome-research

04/09/2026

A family's story about living with Angelman syndrome just reached one of the largest business news audiences in the world.

CNBC featured FAST community member and physician Joe D'Orazio, whose raw and beautifully written story captures both the daily impact Angelman syndrome has on a family and the way his son's diagnosis changed how he practices medicine.

Angelman syndrome is now part of larger conversations about research, innovation, investment, and the future of rare disease. That kind of visibility brings the realities families live with every day to audiences far beyond the rare disease community and creates space for the partnerships and commitment needed to move the field forward.

FAST is helping shape what comes next by investing in the science and strategic partnerships that can accelerate progress in Angelman syndrome.

We are grateful to CNBC for giving this story a national platform, and to the D'Orazio family for sharing their experience with honesty, generosity, and courage.

A doctor reflects on how raising a son with Angelman syndrome reshaped his family, deepened his empathy and turned grief into advocacy.

04/08/2026

Medicaid plays a critical role in the lives of many individuals with Angelman syndrome and other disabilities, helping families access essential services and long-term supports.

Join us on April 28 at 8:00 PM Eastern for an important webinar where we will discuss:

✔ What’s happening right now in Medicaid & policy
✔ Why most decisions happen at the state level
✔ What actually moves the needle with lawmakers
✔ How to share your story in a way that creates change
✔ Simple, actionable steps you can take right away

Whether you are navigating services now or planning for the future, this conversation will help equip families with the knowledge and tools needed to advocate for the supports our community relies on.

Together, we can work to ensure individuals with Angelman syndrome have access to the care and services they need to thrive.

Register here: https://buff.ly/25MhBG2

04/04/2026

Sometimes all it takes is one idea. 💙

On International Angelman Day, Beth Phillips Synk and Laura Foglyano hosted Pinball with a Purpose: Immy’s International Angelman Day Bash, a first-time fundraiser that raised more than $33,000 for FAST.

More than that, they created something full of love, generosity, and shared purpose, bringing together friends, family, and seven Angelman syndrome families from multiple states.

Beth and Laura, thank you for your heart, your leadership, and the beautiful impact you made. We are so proud to celebrate you both. 💙

Learn how Beth started small and took a chance at something bigger: https://cureangelman.org/articles/immy-pinball-with-a-purpose-angelman-fundraiser

04/03/2026

ASF and FAST are incredibly proud of the Angelman syndrome community for your advocacy efforts to start off 2026. Catch the full recap, successes, and what’s next after our 2026 AS Congressional Advocacy Day in Washington, D.C. – an impactful day where 138 advocates representing 37 states participated in 139 congressional meetings!

And to build off the momentum of our federal efforts, we now have Medicaid resources to help families navigate the changes happening at the state level.

Read the updates and find Medicaid resources here: https://buff.ly/7aNxAiD

03/30/2026

Today, we are sharing a disappointing update from the Roche/Genentech regarding the discontinuation of the alogabat program for Angelman syndrome. We encourage you to read the full letter from Roche/Genentech for additional information and context.

Thank you to everyone who participated in this trial. Your commitment is meaningful and continues to move research forward.

Read the full letter: https://bit.ly/Alogabat-Letter-March-2026

03/21/2026

FAST Poland - Foundation for Angelman Syndrome Therapeutics hosted its second nationwide Angelman syndrome conference, bringing together families, caregivers, clinicians, therapists, and researchers for an important day of learning, connection, and shared purpose.

This year’s theme, “From Diagnosis to Therapy,” reflected a critical truth: progress depends not only on scientific discovery, but also on earlier diagnosis, stronger systems, real-world access, and community support.

It was an important day for the Polish Angelman syndrome community and a reminder of the power of collaboration in shaping a better future.

Read the full recap: https://buff.ly/Et2IAOq

03/19/2026

Tonight, we’ll be watching CNBC Cures: Defying Rare Disease.

We’ll be watching for the stories that show what families face every day.
We’ll be watching for the science pushing the field forward.
And we’ll be watching for the bigger conversation rare disease needs more of: how we close the gaps in funding, access, and support that still stand between progress and patients.

This matters far beyond any one condition.

Rare disease families know that visibility matters. So does urgency. We’re glad to see this conversation reach a broader audience tonight at 7 p.m. ET on CNBC.

Hosted by Becky Quick, CNBC will debut an in-depth, one-hour special, “CNBC Cures: Defying Rare Disease,” spotlighting the families dealing with rare diseases and the scientists, advocates, and innovators fighting to change their futures. 'CNBC Cures: Defying Rare Disease' airs tonight, March 19...