Angelman Syndrome Foundation

Angelman Syndrome Foundation The Angelman Syndrome Foundation works to advance the awareness and treatment of Angelman Syndrome t
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06/18/2026

Rolling into summer! ☀️🚲
We're celebrating the riders in the Angelman syndrome community who are pedaling into new adventures, exploring their world, and proving that every turn of the wheel is worth celebrating. 💙

06/17/2026

Behind every Angelman Strong event is a volunteer coordinator who turned an idea into a gathering place for hope, connection, and community. 💙
Because of their dedication, thousands of families, friends, and supporters came together to raise awareness, build community, and fuel critical research for Angelman syndrome.
Join us in celebrating and thanking our Angelman Strong coordinators. Their passion, leadership, and commitment make a lasting difference for our community.

Hope in Action advocacy efforts helped move key Angelman syndrome priorities forward this spring, including progress on ...
06/16/2026

Hope in Action advocacy efforts helped move key Angelman syndrome priorities forward this spring, including progress on Capitol Hill, continued Medicaid education for families, and the opening of the FY26 DOD Angelman syndrome grant opportunity.

Plus, mark your calendar: Hope in Action Advocacy Day returns to Washington, DC on March 10-11, 2027.

Read the full Spring Advocacy Update: https://angelmanadvocates.org/news/f/spring-update-educating-advocating-and-building-momentum

Has it been a while since you completed the ASF Contact Registry? Or if your child recently received an Angelman syndrom...
06/15/2026

Has it been a while since you completed the ASF Contact Registry? Or if your child recently received an Angelman syndrome diagnosis, now is the time!

📌We want YOU to stay connected to the latest in events, resources, research, and clinical trials.
📌By sharing your information, you help ASF shape current and future programs, expand services, and drive research forward for every individual living with Angelman syndrome.

Please take a moment to complete the ASF Contact Registry today. https://angelman.org/contactregistry

Angelman Strong and the ASF Family Conference would not be possible without dedicated partners like Safe Place Bedding. ...
06/10/2026

Angelman Strong and the ASF Family Conference would not be possible without dedicated partners like Safe Place Bedding. 💙
Safe Place Bedding’s continued support for families living with Angelman syndrome helps create meaningful moments of connection, community, and care throughout the year.

There’s still time to enroll in The Future Care Planning Series!A Future Care Plan is the foundation for protecting your...
06/10/2026

There’s still time to enroll in The Future Care Planning Series!

A Future Care Plan is the foundation for protecting your loved one with special needs. This series will empower you to take the first steps in building your Future Care Plan for your family.
Featuring on-demand webinars, interactive resources, and Q&A opportunities, this series will help you…

➡️ Prepare Powers of Attorney Forms (ready for notary!)
➡️Establish an ABLE Account
➡️Complete a Cash Flow Worksheet
➡️Gain a Strong Foundation for Estate Planning

No cost to Angelman Families.

💻Learn more & enroll in this complimentary series: https://angelman.org/resources/future-care-planning

New Published ASF Funded Research! 📣This study is exciting because it describes a safe and highly effective gene-editing...
06/09/2026

New Published ASF Funded Research! 📣

This study is exciting because it describes a safe and highly effective gene-editing approach for treating Angelman syndrome.

Researchers at UNC Chapel Hill focused on the root cause of deletion+ Angelman syndrome: the loss of the maternal copy of the UBE3A gene. Even though individuals with AS still have a paternal copy of the gene, it is naturally “silenced” in the brain by something called Ube3a-ATS. The goal of many therapies is to “unsilence” that paternal copy so the brain can make UBE3A protein again.

Previous gene-editing strategies used tools that cut DNA completely, creating double-strand breaks (DSBs). While effective, those cuts raise safety concerns.

This new study used a modified CRISPR tool called a nickase Cas9 that makes a much smaller, single-strand nick instead of a full DNA cut. That may significantly reduce safety risks while still turning the paternal UBE3A gene back on.

📌The treatment restored UBE3A expression in about 87% of cortical neurons, which is a very strong result.
📌The effect lasted at least 6 months in mouse models.
📌It worked broadly across important brain regions like the cortex and hippocampus.
📌Importantly, it did this without creating double-strand DNA breaks and without evidence of problematic AAV integration.

It is still early-stage research in mice, not a human treatment yet, but studies like this help move the field toward therapies that could potentially provide long-term restoration of UBE3A with fewer safety concerns.

Read the article here: https://www.nature.com/articles/s41598-026-52498-4

The Magical Miles Angels will participate in the 2027 Disney Princess Half Marathon Weekend in Orlando, FL. 🏰February 25...
06/08/2026

The Magical Miles Angels will participate in the 2027 Disney Princess Half Marathon Weekend in Orlando, FL. 🏰

February 25 – March 1, 2027
Walt Disney World® | Orlando, Florida

📣 📣 We have limited spots for the 5K event. Duo teams welcome (age requirement applies). Our spots for the 10K, Half Marathon & Challenge Event are full.

Don't wait! These 5K spots will be gone before you can say "Bibbidi-Bobbidi-Boo!"

📌Find details and complete the interest form today!
https://angelman.org/events/magical-miles-2027

🎉 ASF's 2026 Family Conference full agenda is now live! https://asfconference.org/family-conference/📍 July 30 - August 1...
06/05/2026

🎉 ASF's 2026 Family Conference full agenda is now live! https://asfconference.org/family-conference/

📍 July 30 - August 1, 2026 in Aurora, CO

Get ready for a weekend filled with education, connection, support, and community alongside others who truly understand the Angelman syndrome journey.
✨Research and therapy updates
✨Expert-led educational sessions
✨Workshops and consultations
✨Exhibitor resources and tools
✨Social events and family connections

More than a conference, this is a place to learn, ask questions, build friendships, and feel supported every step of the way.

Still need to register? https://asfconference.org/family-conference/

06/03/2026

Thanks to the passion, dedication, and generosity of our community, we've already surpassed our fundraising goal, raising more than $1.32 million to support critical research and improve the quality of life for individuals with Angelman syndrome.

Together, 9,917 participants came together across 44 Angelman Strong events.

Huge thanks to our National Partners for their generous support: Ionis Pharmaceuticals, Courtney Bed,
RMMS, Safe Place Bedding, The Safety Sleeper by Abram's Nation, Oak Hill Bio, and Ultragenyx!

Every dollar raised helps move us closer to better treatments and a world of greater possibilities for our loved ones. Thank you!

Address

3015 E. New York Street, Suite A2 #285
Aurora, IL
60504

Telephone

+16309784245

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