Foundation for Angelman Syndrome Therapeutics

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...

03/18/2026

If your loved one was diagnosed with Angelman syndrome, you may be feeling overwhelmed, uncertain, and full of questions.

You are not alone 💙

FAST is here to help parents, caregivers, grandparents, and family members find trusted information, connection, and a path forward.

Whether you are looking for reliable resources, answers to common questions, or a community that understands, we invite you to connect with us.

Start here: https://cureangelman.org/newly-diagnosed

03/11/2026

New research strengthens evidence for ORCA, a caregiver-reported tool designed to measure communication in Angelman syndrome, and shows it aligns with widely used and validated developmental and adaptive behavior measures.

Find out more and why this matters: https://buff.ly/Bc4jRgr

03/06/2026

In case you missed the CNBC Cures livestream on Tuesday, you can watch Dr. Allyson Berent and Mike Hanrahan talk about why FAST exists and what our venture philanthropy model is really built to do: not just fund research, but push the work forward with urgency and discipline, so progress can reach our loved ones.

Watch the recording: https://buff.ly/HtOaSc0

03/05/2026

Big news: Team Kick-AS is heading to the 2026 TCS New York City Marathon! 🗽🏃

We’re thrilled to share that for the first time ever, FAST is an official charity partner of this iconic race! We have a very limited number of bibs available--first-come, first-serve--and would love for you join Team Kick-AS to run the five Boroughs with us!

If you secured a bib through the official New York Road Runners drawing, this is the perfect opportunity to dedicate your miles to raising critical funds for Angelman syndrome research.

Learn more and join Team Kick-AS: https://buff.ly/LDmPA8p

03/04/2026

Today marks our 3rd AS Congressional Advocacy Day, where over 150 Angelman advocates take to Capitol Hill to meet with their elected officials. Through personal stories and a united voice, they are having meaningful conversations and making specific legislative requests to ensure Angelman syndrome remains a priority in the U.S. Congress – a federal effort!

JOIN US: We urge families, friends, researchers, and clinicians to amplify our voices by reaching out to your congressional leaders in support of the in-person advocacy happening right now on Capitol Hill!

Take action in 4 easy step to send the same united message to your elected officials:
1️⃣https://bit.ly/2026advocacydayasks
2️⃣Enter your address
3️⃣Put your name, relationship to AS and address in the closing
4️⃣Click “Send It!”

Our 2026 priorities include:
• Asking the Department of Defense (DOD) to continue to include Angelman syndrome as an eligible condition for funding,
• While urging FDA and NIH to prioritize and fund patient-informed, gene-targeted, and real‑world data efforts that accelerate development and evaluation of Angelman therapies

03/03/2026

This is a big week for Angelman syndrome patient-led advocacy.

Today in NYC, FAST leaders Dr. Allyson Berent and Mike Hanrahan will join Becky Quick at the CNBC Cures Summit to discuss the evolving role of patient-led advocacy in rare disease.

Also today in Washington, DC, FAST and ASF are gearing up for Congressional Advocacy Day with a simple goal: show up with voices from across the country, build relationships with congressional offices, and turn more lawmakers into champions for Angelman syndrome.

Different rooms, same goal: making sure families are part of the decisions that shape research, regulation, and access.

03/02/2026

Tomorrow, FAST will join one of the most important rare disease conversations happening this year.

The first-ever CNBC Cures Summit is bringing together leaders across biotech, investment, and policy to focus on what it will take to accelerate the future of medicine in rare disease.

FAST leaders Dr. Allyson Berent and Mike Hanrahan will join Becky Quick for a featured conversation, From Awareness to Action, on how FAST’s venture philanthropy model has helped move beyond awareness to actively fund, coordinate, and accelerate research and clinical development in Angelman syndrome.

FAST will bring a patient- and family-led perspective grounded in ex*****on: the outcomes, shared tools, and trial readiness that help reduce friction and move therapeutic development forward.

Register to watch the free livestream: https://bit.ly/4cinix3

02/28/2026

International Angelman Day 2026 was powered by YOU! 💙

Thank you for sharing your stories, raising your voices, lighting landmarks blue, and helping the world see what life with Angelman syndrome really looks like. Because of this community, these stories traveled farther than we imagined.

See the media moments, the blue landmarks, and what we can build together next:
https://cureangelman.org/articles/international-angelman-day-2026-community-impact

02/27/2026

Congratulations to longtime FAST collaborator Dr. David Segal on being named Chair of the Department of Biochemistry and Molecular Medicine at UC Davis School of Medicine.

For more than a decade, Dr. Segal and his lab at the UC Davis MIND Institute have been key partners in FAST-funded Angelman syndrome research, including advancing our understanding of genetic mechanisms and helping drive innovative, gene-targeted therapeutic approaches.

Read full announcement: https://buff.ly/DIo01j3