Hi Cure,

We have just 73 days left until this year’s Global Science Summit & Gala in Miami, and we want to see you there! Make sure to get your tickets – the early bird rate expires this Thursday, August 31st. 

We can’t wait to celebrate with FAST members from around the world… including our latest international chapter – read on for more!



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

FAST is honored to announce the start of a new chapter: Welcome, FAST Poland! 

On top of all of the struggles experienced by those who have loved ones living with AS, these brave parents have been facing one that many of us can’t imagine: war. 

In the last year, while building a community of over 200 caregivers of individuals living with Angelman syndrome, they also took on actively supporting AS families in Ukraine as their country was ravaged by war. 

Karolina Pospieszyńska - a neonatologist and mother of Tymek, who lives with Angelman syndrome - will serve as president. She is joined by these other incredible parents: Hanna Dianow, Joanna Węgrzyn, Bogumiła Bibel, who will serve as board members. Please help us welcome them, and all of the families they represent, to the FAST community!

Learn more about our latest chapter now:

The FAST Advisory Council (FAC) goes beyond science and research and focuses on new areas to support FAST's development and organizational needs. We are excited to introduce two new members: Julie Renner and Xiaowei Sun!

• Julie Renner, PA-C  — Julie has experience working as a certified physician’s assistant in neurosurgery, emergency medicine, and currently specializes in private practice orthopedics. Her daughter, Sophia, lives with AS.
• Xiaowei Sun, Ph.D, JD — After making a career change from science to intellectual property law, Xiaowei is now an attorney at WilmerHale in Boston. Her daughter, Raye, lives with AS.

The FAC serves as a brain trust for the organization when it comes to advocacy, community engagement, advancing our mission, and fundraising.

Meet the rest of our FAC members:

“If Will CAN, We CAN… and we did!”

On August 15th, over 200 in-person and virtual guests participated in the first annual “If Will CAN, We CAN” event at Surly Brewing Co, Minneapolis, MN, in honor of William, who lives with AS. Guests enjoyed artisan food and craft beer while they participated in the online silent auction and gift basket raffle, bought swag, and made donations. As a result, this group raised over $53,000. 

The Edbergs were joined by other AS families who also brought guests. Together, the group learned about Angelman syndrome, the importance of community fundraising, and why there is so much hope for the future of AS!

“Hosting events and fundraising for CAN on a personal level is a way to not only honor my son, but also to allow me to serve as an experience resource for the community,” said Meghan Edberg, FAST’s Director of Community Engagement.

We’re calling on all FAST families to submit your photos by Friday, September 1st for your chance to see your loved ones featured in this year’s FAST Gala Video.

As a reminder, we’re looking for photos highlighting any of these moments:

• Individuals living with AS accomplishing something new;
• Parents interacting with their children living with AS, going about your daily lives;
• Individuals with AS interacting with members of the community, such as therapists, or other AS families.

Submit your photos here:

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