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Angelman Syndrome Foundation

@angelman_asf

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ASF works to advance the awareness & treatment of Angelman syndrome, while helping families impacted by AS. #angelman_asf

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October is AAC Awareness Month, a time to celebrate the many ways individuals communicate.

The ASF has over 20 FREE Communication and AAC specific resources to support individuals with Angelman syndrome, their families, and the professionals who work alongside them.

✨ Webinars, Stepping Into AAC, ASF conference session recordings, printable documents, 3rd party websites, and more!

Helping our loved ones communicate opens doors to connection, self-expression, independence, and meaningful participation in the world. 💙

📎 Go to angelman.org/resources and select Communication. by @angelman_asf

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2 days ago

“You did not fail this trial. Your child did not fail this trial.”

For Angelman families who carried so much hope into ASPIRE, those words matter.💥

Amanda read the results as the CEO of the @angelman_asf , and then as Jackson’s mom.

That second read hurt.💔

Her message makes room for disappointment while holding onto something no trial can measure: every person’s worth.

Read her heartfelt reflection on Jackson, the families who made research possible, and finding reasons to keep going: Link in first comment 👉

#AngelmanSyndromeFoundation #AngelmanCommunity #Clinicaltrial #AngelmanSyndromeNews #ASPIRE by @angelman_asf

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3 days ago

New ASF Podcast Episode with Dr. Chris Keary! Missed our spring webinar with behavior expert, Chris Keary? 🎙️ Now you can listen to the conversation!

Kathryn Ely, ASF Family Resource Director, sits down with Dr. Christopher Keary of Massachusetts General Hospital to discuss anxiety and challenging behaviors in adults with Angelman syndrome.

Listen, learn and share! Pass this episode along to anyone who interacts with or cares for your individual with Angelman syndrome. The right insight can make a difference.

Listen on Spotify, Apple Podcasts or YouTube Podcasts by @angelman_asf

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3 days ago

We’re excited to welcome Carrie Tackett to the Angelman Syndrome Foundation! As our new Executive Assistant, Carrie will join us in supporting individuals with Angelman syndrome and their families.
We’re so happy to have her on board and look forward to all we’ll accomplish together!
Please join us in giving Carrie a warm welcome! 💙 by @angelman_asf

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5 days ago

The 2026 Windy City Angels take on the #chicagomarathon after months of training, hard work, and dedication. Together, this team of 68 runners has raised nearly $300,000 to support Angelman research and family support programs. We're celebrating 10 years of running for Angelman syndrome!

📣To the Windy City Angels: Thank you for your determination, heart and commitment to honoring our loved ones with Angelman syndrome. We are so grateful for everything you’ve done to get to this starting line. We wish you strong legs and an amazing experience. Soak it all in, celebrate every mile and know that you are not running alone. The entire Angelman community will be cheering you on from all over the world! by @angelman_asf

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8 days ago

Yesterday, ASF and FAST hosted a webinar with Ultragenyx after the announcement that their phase 3 trial for GTX-102 (aspire) did not meet primary or key secondary endpoints.

The webinar recording is now available. Link in bio. by @angelman_asf

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9 days ago

ASF Family Support Fund applications close next week!

ASF’s Family Support Funds can help cover or offset expenses that make a meaningful difference in the life of an individual with Angelman syndrome, or provide caregivers with much-needed respite.

Applications are open only once a year. If you’ve been considering applying, now is the time!

To be eligible, you must:
• Be the caregiver of an individual with Angelman syndrome
• Have not received a Family Fund grant within the past three years

Have an idea but aren’t sure whether it would qualify? Drop your question in the comments! We can help you determine whether your request may be a good fit.

🔗 in bio to learn more and apply today by @angelman_asf

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9 days ago

📸 Share a photo of your loved one using AAC to your Story and tag @angelman so we can celebrate with you! by @angelman_asf

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10 days ago

A huge shoutout to the Granville Angels Foundation in Newark Station, OH, for hosting their annual Cornhole for a Cause Tournament to support the Angelman community! 💙

The weather didn't cooperate this year, but it didn't stop the community from showing up, playing some cornhole and coming together to make a difference.

We are so grateful to everyone who braved the rain, supported the event and helped make it another memorable day for Angelman syndrome.

Thank you, Granville Angels Foundation! by @angelman_asf

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10 days ago

🏃‍♂️ The Chicago Marathon is this Sunday, October 11!

Just in time for race weekend, check out the newest ASF Podcast episode featuring Todd Hill, a 2026 Windy City Angel, who is taking on 26.2 miles at the 2026 Bank of America Chicago Marathon while pushing his 17-year-old son, Logan, as a para-athletics duo.

Guest host and Angelman dad AJ Knouff sits down with Todd for a special dad-to-dad conversation about their families, Angelman syndrome, and the road to Chicago.

🎧 Listen now on Spotify, Apple Podcasts and YouTube Podcasts. by @angelman_asf

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11 days ago

This Sunday, Suzanne will run the Chicago Marathon for the 3rd time. But this year, she’ll be pushing her daughter, Kayleigh, who has Angelman syndrome, for all 26.2 miles.
Running a marathon is a HUGE accomplishment. Running one while pushing another person is an entirely different challenge.

“I’ve accomplished one of the hardest trainings of my marathon career. And it’s just a glimpse of what Kayleigh does every single day…pushing beyond her limits in therapy every week for the last 18+ years.”

This year also marks the 10th anniversary of the Windy City Angels team, making Suzanne and Kayleigh’s journey even more special. 🏃‍♀️💙

Interested in being a Duo Team with Windy City Angels in 2027? Email atammaro@angelman.org to learn more. by @angelman_asf

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12 days ago

In September, Ultragenyx announced their phase 3 trial for GTX-102 (Aspire) did not meet primary or key secondary endpoints.

To learn more, join Ultragenyx on a community webinar hosted by ASF and FAST on Thursday, October 8, 2026 at 2:00pm EST.

Submit your questions and register to attend.
Link in bio by @angelman_asf

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13 days ago