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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Powers of Attorney Live Q&A is next week! Establishing your Powers of Attorney will ensure you have the legal authority ...
09/03/2026

Powers of Attorney Live Q&A is next week! Establishing your Powers of Attorney will ensure you have the legal authority to act for yourself and your family. It helps move you from the stress of the unknown to peace of mind.

In the Powers of Attorney for Parents and Caregivers module, you will gain an understanding of the different types of Powers of Attorney, key designations, and how to establish them for your family.

Watch the Webinar Now > https://protectedtomorrows.com/asf

Then, join Protected Tomorrows for the ‘LIVE’ Q&A Session on Powers of Attorney.

Enrolling for the first time?
Enter your name, email and password: ASF2026

We have just learned that the phase 3 Aspire study for GTX-102 (apazunersen) in Angelman syndrome did not achieve the pr...
09/02/2026

We have just learned that the phase 3 Aspire study for GTX-102 (apazunersen) in Angelman syndrome did not achieve the primary endpoint of change from Baseline in Bayley-4 cognitive raw score nor the key secondary endpoint of net response in Multidomain Responder Index (MDRI).

As a community, we are disappointed by this news. Although this outcome is not what any of us hoped for, it does not change our commitment to helping our loved ones living with AS - a goal we share with the entire Angelman syndrome community around the world. Clinical research is only possible because families are willing to step forward. Your contribution to this field is profound, and we are deeply grateful.

We have requested a community webinar from Ultragenyx, and will release any related information as soon as we have it.

If you are currently participating in an Ultragenyx clinical trial, please contact the physician who leads the trial (PI) with any questions and to discuss next steps.

If you have questions about the trial and this data, please contact [email protected].

Read the press release: https://ir.ultragenyx.com/news-releases/news-release-details/ultragenyx-announces-phase-3-aspire-results-angelman-syndrome

Ionis has shared a letter to the Angelman syndrome community with an important update on the design of CHAMPION, their p...
09/02/2026

Ionis has shared a letter to the Angelman syndrome community with an important update on the design of CHAMPION, their phase 3 clinical trial for ION582 (obudanersen) in people with Angelman syndrome due to UPD or ICD.

They are actively preparing to initiate the CHAMPION study. Eligibility criteria are available on clinicaltrials.gov; additional details, including study locations, will be updated as they become available.

Read the letter: https://bit.ly/4x3Ue2W
View study on clinicaltrials.gov: https://clinicaltrials.gov/study/NCT07782827

Session recordings from eight General Sessions are now available on the ASF YouTube channel!Whether you attended the con...
09/01/2026

Session recordings from eight General Sessions are now available on the ASF YouTube channel!

Whether you attended the conference and want to revisit a session, missed one you were hoping to see, or joined us virtually, you can now watch these informative presentations at your convenience.

Watch the Friday General Sessions:
😎ASF Opening Session
💉Therapeutics & Clinical Trial Updates
🔬Today’s Science and Tomorrow’s Breakthroughs
👨‍⚕️Healthcare in Young Adults
👋Everyday Independence
🚽Toileting, Regressions, and Starting in Adulthood
😄Medicare, Medicaid, and Adult Insurance Benefits
🎓Post-High School Programs

Checkout the playlist here: https://www.youtube.com/playlist?list=PLWMvD2tNPQyI

Ultragenyx released their Summer 2026 Angelman Syndrome Community Newsletter which includes updates on their investigati...
08/31/2026

Ultragenyx released their Summer 2026 Angelman Syndrome Community Newsletter which includes updates on their investigational clinical trials, insight on an Angelman Syndrome (AS) Caregiver Leadership Council (CLC) meeting, and more.

Read the newsletter:https://angelman.org/wp-content/uploads/2026/08/UGX-Summer-Community-Update_August2026.pdf

Today, on National Grief and Bereavement Day, we pause to remember those who are no longer with us and honor the familie...
08/30/2026

Today, on National Grief and Bereavement Day, we pause to remember those who are no longer with us and honor the families who carry their memories. 💙

If you have lost a loved one with Angelman syndrome, please know that you are not alone. Consider using one or all of these tools to support families through grief and loss:

📷Share their memory. Add a photo and tribute to the ASF Memory Wall to honor your loved one and keep their memory part of our community. https://angelmanday.info/in-memory

💙 Free counseling for Angelman families. ASF offers free counseling to help families navigate grief, loss and the emotions that come with it. https://angelman.org/resources/counseling-services

🌿 Willow & Wind. This grief community, offered through the Child Neurology Foundation logy Foundation, connects families who have experienced the loss of a loved one with a neurological condition.
https://www.childneurologyfoundation.org/willow-and-wind-a-cnf-grief-community

Let's see your back to school pictures in the comments! Wishing everyone a great start to the new school year!
08/24/2026

Let's see your back to school pictures in the comments! Wishing everyone a great start to the new school year!

We're excited to announce two new grant opportunities for Angelman families!Applications will open at the same time as t...
08/18/2026

We're excited to announce two new grant opportunities for Angelman families!
Applications will open at the same time as the ASF Family Fund, with the next application period October 1-14.

Stay tuned for more information about eligibility and how to apply this fall.

📌Respite Grant
Angelman caregivers will be able to apply for funds to create a meaningful respite opportunity, giving them time to rest & recharge.

📌Sophie Burdine-Schwartz Impact Fund
Families will be able to apply for funds to support something that could make a meaningful impact in the life of their individual with Angelman syndrome.

Address

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

Telephone

+16309784245

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