ASF Walk - Austin, TX

05/15/2026

Make an impact and double your donation!!💙💪🏻

💙 THE POWER OF 15 💙

Today, May 15, we are launching a special 15-hour fundraising blitz for Angelman Strong 2026. YOU can help us unlock an incredible $15,000 matching gift!

Why 15?
Angelman syndrome is caused by a loss of function on the 15th chromosome, making this number deeply meaningful to our community.

⏰ From 8AM to 11PM EST, every donation made during our Power of 15 campaign will help us work toward unlocking a $15,000 matching gift from a generous donor.

🎯 Our Goal:
Raise $15,000 in 15 hours to unlock the match and turn it into $30,000 for the Angelman Syndrome Foundation.

Here’s how you can help:
✅ Donate on May 15th
✅ Share this campaign with family & friends
✅ Ask others to give just $15 in honor of the 15th chromosome
✅ Help us spread awareness for Angelman syndrome

Every gift matters. Every share matters. Every dollar gets us closer to critical research, support, and hope for families impacted by Angelman syndrome.

05/14/2026

04/15/2026

✨ Don’t miss these fundraising incentives!! ✨

03/26/2026

Your Angelman Strong participation,fundraising efforts and support make an impact!💙

03/16/2026

Hello Texas Advocates,

An opportunity for rare disease advocates came to our inbox so we wanted to pass it along to you all – interested or active advocates for AS!

From Amber N. Freed, Founder, CEO & Mother - SLC6A1 Connect

I’m currently looking to connect with rare disease advocates across Texas to help plan the first Rare Texas Day. This event will focus on effective advocacy at the state level, including engagement with policymakers, hospital systems, and other key stakeholders. We are aiming to hold the event in Spring 2027 and are beginning to gather individuals who may be interested in helping shape and participate in this effort.

If you’re willing, would you mind sharing the link below with colleagues or community members in Texas who may want to get involved? Thank you so much for helping us build a stronger rare disease advocacy community in Texas.

Link: https://secure.everyaction.com/0OcqrHD0vUCCkvNwlTPuWQ2

Sincerely,

FAST & ASF | Anglemanadvocates.org

03/13/2026

Your Angelman Strong fundraising efforts are making a real and meaningful impact. Because of this incredible community, important advancements in Angelman syndrome research are happening right now—bringing us closer to better treatments and, one day, a cure.

Every dollar raised, every mile walked, and every story shared helps fuel the scientists, clinicians, and families who are working tirelessly to change the future for individuals living with Angelman syndrome.

From groundbreaking research studies to expanding clinical trials and increasing awareness around the world, your dedication is helping turn hope into progress.

Thank you for standing strong with us and continuing to move this mission forward. Together, we are making a difference. 💙

ASF-Funded Research Published!
New findings show that increasing overall UBE3A levels may improve many Angelman-related learning and behavioral challenges. This discovery is an encouraging insight for future gene therapies.

The study also found that seizures appear to be linked to one specific version of the UBE3A protein, helping explain why epilepsy in Angelman syndrome can be especially difficult to treat.

“The UBE3A gene makes a protein that comes in two different versions – one short form of UBE3A and one longer form. In our study, we explored how each version of UBE3A contributes to certain Angelman syndrome symptoms using a mouse model. We found that most symptoms could be improved with either version of the UBE3A protein. However, seizures associated with Angelman syndrome depended on only one specific version (the shorter form of UBE3A). This information is expected to guide future therapeutic development strategies.”
— Joe Krzeski, first author
UNC Chapel Hill, North Carolina

“Our study highlights the importance of restoring the appropriate versions of the UBE3A protein to address the full spectrum of Angelman syndrome symptoms. This has important implications for gene-therapy approaches aimed at reinstating one or both versions of the UBE3A protein.”
— Ype Elgersma, principal investigator
Erasmus University MC, Rotterdam

This ASF-funded work helps move the field toward smarter, more targeted therapies for the Angelman community.

Discoveries like this happen because of fundraising and participating in events like Angelman Strong. Every donation fuels ASF Funded Research. Thank you for making this happen!

See the published work here: https://www.nature.com/articles/s41380-026-03468-9

02/10/2026

Don’t forget to register by Feb 15th to get a $5 discount. Use Discount Code - ASF

01/21/2026

Mark your calendars! Angelman Strong registration opens Feb 3rd! 💙💪🏻

Plan to join us in May for Angelman Strong! 🎉 Registration opens February 3. We can’t wait to come together as a community that shows up with strength, heart, and purpose.

Promo Code for $5 Discount: ASF

See details and list of 2026 locations: www.angelman.org/strong

Every step, every team, every story helps move the Angelman community forward.
Mark your calendar and get ready to go Angelman Strong 💪✨

01/08/2026

Registration is now OPEN for the ASF Family Conference! We hope you can join us in Colorado in July!!

Registration is officially OPEN for the 2026 ASF Family Conference! 🎉

From connection and learning to laughter and unforgettable moments together, the ASF Conference truly has something for everyone!

Register and join us for 3 unforgettable days in Colorado.

📌 Ga***rd Rockies Resort | Aurora, CO
📌 July 30 - August 1, 2026

Sessions will include topics like seizures, communication, behaviors, expert panels, research, and more! Full agenda to be announced at a later date.

Learn more and register today: https://asfconference.org/family-conference/

12/15/2025

Happy Holidays to you and your family from all of us at the ASF!