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Angelman Syndrome Foundation

@angelmanfoundation.bsky.social

39 followers 1 following 29 posts

The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We e

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Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Sep 4

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Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Aug 25

We’re proud to share that many of the nation’s best hospitals by U.S. News & World Report are where ASF Clinics exist. We can attest that ASF Clinics deliver exceptional care, advance clinical trials, and support individuals with Angelman syndrome every day.

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Jul 24

Was so happy that our son got to meet his hero’s in the angelman space! @benphilpott.bsky.social

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Jul 24

Today marks the start of the 2025 ASF/Dup15q Research Symposium—a gathering of some of the brightest scientists, clinicians, and industry leaders from around the world.

This closed-door meeting is designed to foster open, collaborative conversations about the latest research and breakthroughs in AS

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Jul 14

Save The Date!

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Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Jun 29

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Jun 26

We’re excited to announce the launch of our new website at angelman.org! 🎉 Our updated site features easy navigation and filters that help you find the resources, clinics, research, and support you need on any device. Check it out!➡️ angelman.org

Reposted by Angelman Syndrome Foundation

Bunch Bikes @bunchbike.com · Jun 9

Kaitlin in Sacramento is LOVING her Bunch Bike - but her son, who has some adaptive needs, keeps unbuckling his seatbelt.

Called our friends at Seatbelt Planet, found a locking buckle used on amusement park rides. Now we're offering this option for all families thru our adaptive equipment program!

Picture of locking buckle option with caption

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Angelman Syndrome Foundation @angelmanfoundation.bsky.social · May 14

ASF-funded research is fueling real progress. 💥 Over the past 20 years, ASF has invested $16 million into 138+ research grants, leading to breakthroughs in gene therapy, ASO treatments, and seizure management for Angelman syndrome.

🔗 Find your walk and join us: angelman.org/strong

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Apr 23

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Mar 24

The annual ASF Newsletter is arriving in mailboxes! 📬 Didn’t get yours? Make sure you're on the list by joining the ASF Contact Registry: www.angelman.org/about/contactregistry.

Check out the digital version of the newsletter here: sholink.to/082ab024. 💙

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Mar 19

T-shirt deadline closes on Friday. Make sure you register today. www.angelman.org/strong/

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Mar 11

Join us this May for Angelman Strong, a nationwide event at 40+ locations. Together we'll make an impact for the Angelman syndrome community! 🌟

Plus, sign up by March 21 to guarantee your Angelman Strong t-shirt. 👕💙

Be part of something powerful!
Sign up now! 👉 www.angelman.org/strong

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 20

The Spring ASF Newsletter will hit mailboxes (in the US) in March. Do we have your address? Have you moved or recently received an Angelman syndrome diagnosis?
Complete our Contact Registry to make sure you're on our mailing list.

👉 www.angelman.org/about/contactregistry

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 18

We are just 15 days away from our 2025 AS Congressional Advocacy Day!

ASF and FAST are preparing for this important day and we wanted to share with the community the legislative priorities

Read Priorities: www.angelman.org/articles/advocacy-in-current-environment

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 17

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 15

It's #InternationalAngelmanDay. Let's spread the word, raise awareness & create a more inclusive world. 🌎💙

#angelmanday2025 #AngelmanSyndromeAwareness #AngelmanStrong #angelmansyndrom

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Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 13

Encoded Therapeutics announced an update on their Angelman syndrome miRNA program indicating that IND-enabling studies have been initiated for their investigational gene therapy candidate (ETX201) to support a potential filing in 2026 to begin testing in humans. Learn more: bit.ly/4hHsD0z

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 12

⭐Get your discount before it's gone! 💰Register for Angelman Strong today and receive $5 off all fees. No location near you? Register for the Virtual location.
Plus, every individual with AS registered is entered to win a Fat Head. 😀

Find details and locations: www.angelman.org/strong

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 10

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Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 3

Family and friends!!!

It’s that time again! The 2025 Angelman Strong Walk is coming, and we would LOVE for you to join us as we walk for Jackson and all individuals living with Angelman syndrome! 💙

it’s not just a walk, it’s a movement.

support.angelman.org/indianapolis...

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Feb 1

15 ways in 15 days to spread awareness for international Angelman syndrome day on the 15th! www.angelman.org/wp-content/u...

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Jan 29

Join is

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Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Jan 19

Join us and be Angelman Strong!

Angelman Syndrome Foundation @angelmanfoundation.bsky.social · Dec 17

UPDATED SEIZURE RESOURCE. The Seizure Treatment Guidelines are designed to share with your medical team. a valuable resource for emergency situations. Provides guidelines and recommendations for treating seizures

Found on our website, under Seizure Resources.
Download it here: bit.ly/49JqY7J