Heath's Heroes

02/15/2026

Happy International Angelman Day!!! 💙🧬🎊

02/11/2026

💙 International Angelman Day is coming up on February 15 💙

This day honors individuals with Angelman Syndrome celebrates their joy, resilience, and the families and communities who support them every day. Justice for Kids proudly advocates for children with disabilities who have been injured—working to protect their rights, hold responsible parties accountable, and secure the care and support they need to thrive.

Every child deserves safety, dignity, and justice. 💙

Hope has a name—and for one incredible family, it’s Heath. 💛

In honor of International Angelman Day (Feb. 15), we’re sharing the story of one of our own: Lisa M. Hoffman, Justice for Kids Partner, devoted mother, and passionate advocate for children with disabilities both in and out of the office. Her son Heath was diagnosed with Angelman Syndrome at age two. And since then, Lisa has turned grief into purpose—and purpose into action.

Learn more about Lisa, Heath and Angelman Syndrome on the blog: https://justiceforkids.com/hope-has-a-name-lisa-hoffman-angelman-syndrome-and-the-fight-for-a-brighter-future/

02/05/2026

👏👏👏

Big wins for the Angelman syndrome community!

Congress has passed key Fiscal Year 2026 (FY26) funding bills - all three Angelman priorities were included. Thank you to our incredible advocates and bipartisan champions for making this possible.

Because of your advocacy, Angelman syndrome remains eligible for federal research funding through the DOD, and Congress has directed NIH and FDA to take concrete steps to advance research and drug development. 🎉🤩

Included in the funding package were also key healthcare provisions FAST and ASF have been advocating for alongside partner organizations. These provisions included: extending the FDA's Rare Pediatric Priority Review Voucher (PRV) program to incentivize rare pediatric drug development, reducing Medicaid barriers for children who must travel across state lines for specialized care, and continuing Medicare coverage of telehealth services.

Read more: https://angelmanadvocates.org/news/f/angelman-community-delivers-big-wins-in-fy26-fund-bill

💙 Let’s keep the momentum going - Join us this March 3-4th for the 2026 AS Congressional Advocacy Day.
Register now: https://angelmanadvocates.org/advocacy-day

12/25/2025

Merry Christmas!!! 🎄❤️🎅💚 2️⃣0️⃣2️⃣5️⃣

11/22/2025

What a day! Beautiful weather, full field, and fun had by all while raising money for Foundation for Angelman Syndrome Therapeutics to !!! Thank you NSB community for showing up and making an impact!! 💥👏⛳️

11/22/2025

THANK YOU to our 2025 Hole Out Fore Heath Golf Tournament sponsors who support our mission to !!! 💚💪🙏⛳️

11/20/2025

Saturday is tournament day!!! ⛳️☀️
If you are not able to join us for golf, please stop by Hidden Lakes Golf Clubhouse, New Smyrna Beach, any time from 8a-1p and check out our amazing raffles and silent auction baskets!!! Get some Christmas shopping done early, and for a great cause! All proceeds go to Foundation for Angelman Syndrome Therapeutics!
Hope to see you there!

11/16/2025

We can't wait see everyone next weekend!!! 💚🏌️‍♀️🏌️‍♂️⛳️

Fun Fact: Dr. Charles Williams and Dr. Jaime Frias of the department of Pediatrics, Division of Genetics, University of Florida College of Medicine, Gainesville proposed the name Angelman Syndrome in 1982 when submitting a paper to the American Journal of Medical Genetics about 6 patients with common features of severe developmental delay, abnormal gait, craniofacial abnormalities, and frequent episodes of laughter. The name comes from English physician Dr. Harry Angelman who first recognized the condition in 1965.

Go Gators! 🐊💙🧡

11/09/2025

An annual event to celebrate the community and honor those living with Angelman syndrome.

11/07/2025

One of Heath's favorite nights of the year at the Foundation for Angelman Syndrome Therapeutics Summit community event!! ▶️💦🫧

11/06/2025

“This trial represents a new era in Angelman syndrome research,” said Dr. Elizabeth Berry-Kravis, MD, PhD, Principal Investigator for the ASCEND-AS trial.

“For the first time, we are testing a one-time therapeutic approach that directly targets the genetic root cause of Angelman syndrome by replacing UBE3A expression in neurons. This is a meaningful step forward for the entire Angelman community, serving as an example for other genetic neurodevelopmental disorders.”

Read press release:
https://www.prnewswire.com/news-releases/mavrix-bio-announces-first-patient-dosed-in-ascend-as-trial-of-mvx-220-investigational-gene-therapy-for-angelman-syndrome-302607143.html