What a month February was, Cure!

The global Angelman community lit up landmarks around the world blue and shared our Moments of Hope for International Angelman Day, and FAST joined other rare disease organizations in Washington, DC for Rare Disease Week.

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

Karly Werner, FAC Council Member, and Jennifer Panagoulias, head of regulatory and policy and co-director of ABOM, were hard at work for FAST last week in Washington, DC for Rare Disease Week. They attended activities sponsored by NORD and Everylife along with other patient advocacy foundations and then it was off to Congress!

Karly and Jennifer divided and conquered meetings with several representatives from Minnesota and Massachusetts. It was a great step in raising awareness about AS and something we need to continue across all 50 states!! 

Click here to read more:

It's all starting! The F.A.S.T. Fellowship in clinical trials is open for applicants! 

Just three months after we announced the launch of this first-of-its-kind flagship center, we are excited to announce that the center is ready to receive applications for two fellowships for this unique opportunity. 

The RUSH F.A.S.T. Center for Translational Research, led by Dr. Elizabeth Berry Kravis, will be the global headquarters for training young investigators how to run clinical trials for neurogenetic disorders and deliver innovative interventional therapies that require unique delivery methods and specialized care.

Read the press release from December 2022:

Payers consider the impact of caregiving in Angelman syndrome when making coverage decisions for new therapies.

In conjunction with Medicus Economics and FAST US, we have developed a survey that gathers information on your family's care responsibilities and costs, impact on work, leisure, and health/wellbeing as a result of your loved one's Angelman syndrome diagnosis.

We currently have 84 responses, but we still need a few more! We have almost 800 US families in the Global Angelman Syndrome Registry, and we need 150 responses for this incredibly important work.

Click here to get started or continue the survey:

Here are three quick steps to complete the survey:

1. Login or register (Forgot your password? Create a new one that follows the rules to protect your data)
2. Complete any open consents
3. Start/continue the survey

In last week’s FAST newsletter, we mentioned the end of funding to the Emergency Hotline. We would like to thank Dr. Jessica Duis for creating this infrastructure; the project was co-led by Dr. Srishti Nangia, and Dr. Nangia, Dr. Duis, Dr. Diana Walleigh and Dr. Elizabeth Berry-Kravis provided expert consultations from across the world including the US, Australia, and Europe. Dr. Duis continues to make herself available for emergency consults at AngelmanExpertConsult@childrenscolorado.org.

After an action-packed first two months of the year, we’re starting to look further ahead to the 2023 Global Science Summit in November! We’re excited to see the community in Miami again.

As always, please share this link with anyone who would be interested in receiving our updates.