Hi Cure,

Check out these exciting updates from the Global Angelman Syndrome Registry and the FAST community!



If you have updates you would like to be included in next week’s newsletter, please email us at info@cureangelman.org.

The Foundation for Angelman Syndrome Therapeutics is contributing data to C-Path’s Rare Disease Cures Accelerator - Data Analytics Platform (RDCA-DAP), accelerating neurological sisease research and therapeutic development. By contributing data from the Global Angelman Syndrome Registry to RDCA-DAP, FAST is providing crucial information that will help to create potential research tools and accelerate research and therapeutic development for AS through robust data analysis in a centralized, standardized, and curated infrastructure. The data analytics platform is made possible through a collaborative grant from the US FDA.

“We are thrilled to embark on this collaboration with the Critical Path Institute and RDCA-DAP,” said Meagan Cross, FAST Board Chairperson. “This collaboration allows us to tap into the incredible potential of caregiver-entered data and create opportunities for significant advancements. Together, we look forward to positively impacting outcomes for patients with Angelman syndrome and other rare diseases.”

You can read the press release here:

When we view our children solely through the lens of a clinic, we see only a fraction of their true selves. Since they cannot express themselves through words, it becomes our responsibility to be their voice and share their daily experiences with the world. By doing so, we can drive the necessary changes to improve their lives effectively.

The Global Angelman Syndrome Registry (GASR) is where we collect and collate data on individuals diagnosed with AS worldwide. Parents and caregivers drive data collection by contributing information on diagnosis, medical history, development, and more in a series of online modules.

Join the registry now and be a part of a transformative movement where your data becomes a powerful agent of change, paving the way for groundbreaking research and improved understanding of AS. Together, we can unlock vital insights, accelerate progress, and ultimately shape a brighter future for our loved ones. Don't wait; your contribution matters, and every entry counts in our shared mission to make a difference and create a world of hope and possibilities for individuals with AS.

Register now:

On Thursday, July 13, Hopeful Halos Foundation led by Todd and Karly Werner, hosted their 5th Annual Links for Louie Charity Golf Tournament. Over 125 golfers and guests enjoyed a day filled with golf, a silent auction, live raffle, and activities throughout the course. They raised over $40,000 in honor of their son, Louis, and to benefit FAST. This year’s event puts them over the $200,000 raised since the inaugural tournament!

“We started the golf tournament to raise money for FAST, and that remains our core mission.  But the generosity and compassion our community has shown and the love they give Louis is equally inspiring.  We encourage everyone to hold an event, no matter how small or profitable, to feel that same love and maybe raise some money.” – The Werners

Julien De Bournet, board member of FAST UK, has three children, Aloïs, Gaïa, and Calixte, who lives with Angelman syndrome. 

Aloïs, Calixte’s older brother, wrote an article about their relationship that was recently selected to be featured by Mind’s Eye Prep, a national magazine in the UK. 

Click below to read the touching article about this sibling relationship!

Thanks for reading, and please share this link with anyone in your network who would be interested in receiving our weekly newsletter.