Hi Cure, Happy June!

As beautiful summer weather begins, so do our outdoor CAN fundraising events — see more info below and make sure to bring your sunglasses!

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

This week in New York! Over 80 world experts — scientists, clinicians, pharmaceutical executives, regulators, and other thought leaders — are gathering at the Simons Foundation for the 3rd Annual International Angelman Syndrome Research Council (INSYNC-AS) meeting. This is a brain trust of experts who are working together to accelerate accomplishing FAST’s mission: to bring transformative treatments to all individuals living with Angelman syndrome.

The goal of this meeting is to find ways to build on the recent successes, encourage research in underdeveloped areas, and accelerate drug development for Angelman syndrome, while helping to support applications to other neurodevelopmental disorders (NDDs). 

You can read more about this collaboration here:

Laura and Patrick Sargent are the parents of Maddie, who lives with Angelman syndrome, along with her twin sister Kellie and older brother, Colin. Maddie was diagnosed with AS at 15 months of age. In the past 3 years, the Sargents have put significant effort into supporting the AS community in a variety of ways. In 2022, they hosted their first Maddie’s Mission Block Party where they raised over $50,000 to benefit FAST. This incredible fundraising effort provided the Sargents the opportunity to attend the CAN (Cure Angelman Now) Grand Prize Trip to NYC and Yale University along with other top fundraisers. 

"The FAST trip showed us a new side of the Angelman community focused on finding treatments and a cure for our children. The parents and families have gotten us through so many dark and hard times. It is inspiring to bring groundbreaking research and science to our fundraising efforts. Seeing and hearing from so many brilliant minds who don't personally know Maddie and other children with AS but are dedicating their lives and careers towards impacting their lives is humbling and heartwarming. The FAST community is strong and we look forward to supporting its continued growth and successes. As Maddie's Mission grows, so does our love of this community. - Laura and Patrick Sargent

Learn more about Maddie’s story and upcoming events:

The Eunice Shriver National Institute of Child Health & Human Development (NICHD) is looking for research study participants to create a questionnaire known as the EDI-Self-Report (EDI-SR). The EDI-SR was designed to measure emotional experiences in autistic teens and adults and teens and adults with other intellectual and developmental disabilities (IDD). 

Who can participate?

This study is seeking volunteers — individuals ages 11+ with a diagnosis of an intellectual or developmental disability (IDD), such as Angelman, Down, Fragile X, Rett, Prader-Willi, or Williams syndromes, and their parents/caregivers.

What does the study entail?

1–2 hours of completing a series of online surveys.

Compensation:

$75 Amazon e-gift cards for your time and effort within 10 business days of completing the surveys. 

Learn more:

We are less than two months away from opening registration for the 16th Annual FAST Global Science Summit & Gala!

We are excited to also offer several affordability options that will launch on August 1st:

• As always, the Global Science Summit is free to attend, with a virtual option available
• Scholarships which help cover flight, hotel, and gala ticket costs 
• Gala ticket giveaway for parents
• Early bird hotel room and gala ticket prices

We invite all families in financial need to apply for a scholarship after August 1st.  If you are not selected, there still will be time to purchase and book at the early bird rates.

We can’t wait to see you on November 10–11, 2023 in Miami, Florida!

Summer is here in the US! As many families start planning their summer events, we invite you to consider attending or supporting a CAN fundraiser near you.

We currently have 9 CAN community fundraising events benefitting FAST on the calendar this summer where supporters will golf, throw cornhole bags, and sip on local brews.

Find an event near you:

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