Granville Angels Foundation

05/14/2026

A huge shout out to Little Village Academy and LVA Families!!! This past week they taught their students about Angelman syndrome and held their annual Trike-A-Thon in support of The Granville Angels Foundation! LVA families generously raised $1,000 that will go towards research and finding a cure for our children! We cant thank them enough for their support over the past several years!!

03/06/2026

The Granville Angels joined over 140 advocates from 38 states to take to Capitol Hill this week for the annual Angelman Syndrome Congressional Advocacy Day!

We held meetings to...

👉 Ensure Angelman syndrome remains an eligible condition under the Congressional Directed Medical Research Program. AS does not discriminate and several military families navigate this diagnosis in areas where speciality care can be challenging to obtain. Even our very own Matthew Rees and Jonathan Renner are Marine Corps Veterans! 🇺🇸

👉Keep the voice of the patient in mind when the FDA evaluates potential therapeutics for drug approval. Small gains in communication, independence, sleep, safety awareness and mobility can be life changing for our loved ones! 🙌

👉Discourage cuts to NIH funding and encourage more funding for AS research. Drug development costs MILLIONS! It cannot be funded solely on the backs of parents and caregivers... although we are a mighty group of people! Platform technologies targeted at AS have utility in other neurological disorders and so investing in AS will benefit more individuals in the US and across the globe! 🌎

Thank you Foundation for Angelman Syndrome Therapeutics and Angelman Syndrome Foundation for organizing this monumental event!

Thank you Rep. Troy Balderson for supporting the AS community in our efforts!

02/28/2026

Today is Rare Disease Day.

An estimated 350 million people live with a rare disease worldwide. There are more than 10,000 known rare diseases and fewer than 5% have an FDA approved treatment.

Behind every rare disease is a person, a family and a story that matters. We wear stripes to shine a light on the urgent need for research, equitable care, and earlier diagnosis. 🦓

02/27/2026

Excited for Dr. Allyson Berent and Mike Hanrahan to represent FAST during the first ever CNBC Cures Summit on March 3rd!

The first-ever CNBC Cures Summit on March 3 will spotlight conversations focused on accelerating the future of medicine through breakthroughs in rare disease research.

Dr. Allyson Berent, FAST's chief science officer and co-founder of AS2Bio, and Mike Hanrahan, entrepreneur, investor and vice chair of FAST’s board of directors, will join Becky Quick to discuss FAST's venture-philanthropy model and how patients have remained at the center of the work being done.

Learn more and register for the livestream: https://bit.ly/4cinix3

02/15/2026

Today is International Angelman Day! Here at the Granville Angels Foundation we are wearing & lighting blue, getting state proclamations, and supporting all those individuals affected by this devastating syndrome.

We hope you will join us in wearing blue, lighting your house or business in blue, researching more about Angelman, or coming out to one of our fundraisers to make a difference in these Angels lives!

02/12/2026

We can’t thank our Angel friends enough!

Tony’s 9th annual Super Champy raised over $2,100 for our Sophia, John, and other Angels. We would have loved to have been there in person but a snowstorm and then a schedule conflict w/ Mickey Mouse kept us away.

Thanks again Tony and crew for your love and support!

01/15/2026

💙 We’re one month away from International Angelman Day (IAD), a global day focused on raising awareness for individuals living with Angelman syndrome. This day is officially recognized by the state of Ohio.

Join us in wearing blue on February 15th and learning more at https://angelmanday.info. More information will be shared in the coming weeks!

11/25/2025

Thank you Foundation for Angelman Syndrome Therapeutics for highlighting our wonderful community!

11/19/2025

Please check out the most recent episode of Behind the Mystery on The Balancing Act, featuring many individuals from the Angelman community.

Thank you to Amanda Moore and her family, the Sudgen Family, and Dr. Elizabeth Jalazo for their courage and vulnerability to speak openly about Angelman syndrome and the impact it has on their loved ones lives. Also, thank you to Ryan Fischer for discussing the importance of advocacy and providing guidance to the Angelman community over the last 2 years so that our voices can be heard at a federal level. It is our tremendous community that cultivates hope for the future and keeps us moving forward despite the day to day challenges. 💙

Imagine a disease so rare and complex that your child laughs and smiles almost perpetually and remains in a childlike state even well into adulthood. Imagin...