FAST is very excited to be gaining new leaders on the Board of Directors and Family Council. Please help us welcome Guy Shapira & Karly Werner to the board of directors, and Julie Renner, our new head of the Family Council!

Meet our new members:

A new and exciting article has been published, leveraging data from the AS Natural History Study (AS NHS), to explore the progression of developmental milestones and daily living skills in individuals living with Angelman syndrome.

This research underscores the critical role of NHS studies in revealing how the presentation of AS evolves over time and the extent to which these changes are influenced by genotype. Such insights are invaluable, not only for informing clinical management but also for identifying which clinical outcomes are likely to indicate efficacy in the testing of future treatments.

Learn more about this research:

Thank you to those who joined the FAST & ASF hosted PFDD (patient-focused drug development) Community Webinar on August 20th. The recording is now available. In anticipation of the PFDD Meeting scheduled for January 29, 2025, please stay tuned for important updates on how you can get involved through surveys, panels, live polling, and discussions.  

Listen here:

ASF and FAST applaud FDA’s recent announcement regarding the establishment of a Rare Disease Innovation Hub.  

The Hub is an intercenter collaboration to address common scientific, clinical, and policy issues related to rare disease product development, including relevant cross-disciplinary approaches related to product review, and promote consistency across offices and Centers. 

Learn more about the Rare Disease Innovation Hub:

Last month, Sutton Strong hosted the 4th Annual Joe Bologna’s Charity Golf Outing in honor of Sutton Smith who lives with AS. Thank you to this amazing family and their generous community for once again raising awareness and funds in support of FAST’s mission!  

Read more and check out photos:

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