Exciting news for the Angelman syndrome community! Ionis has just shared positive preliminary results from the Phase 1/2a HALOS clinical trial of investigational ION582. Ionis will be providing detailed results from the study at the upcoming Angelman Syndrome Foundation meeting in July, which will be streamed for those who cannot attend.

Read the community letter and full press release here:

Since March 7, FAST, ASF, and the AS advocates who gathered on Capitol Hill have not let up on our specific asks to Congress. Our inaugural year has been very successful as several bipartisan policymakers have agreed to submit our requests to the Appropriations Committee for Fiscal Year 2025!

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Congratulations to Dr Ayman El-Hattab and his team, including Dr Fida Dyab (Angelman mom), for organizing this important conference for the region. FAST was honored to participate in the Angelman Symposium of the MENA (Middle East North Africa) Congress for Rare Diseases last week. This conference was such a great opportunity to bring stakeholders together!

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Earlier this month, the Teutonic Crossfit community in Germany came together to support Kayleigh, who lives with Angelman syndrome, in an inaugural fundraiser. “Kettlebells for Kayleigh'' attracted roughly 70 attendees for some competition, live music, food, and fun! Sara, Kayleigh’s mom, shared that this event was filled with words of encouragement and made her feel less alone in this journey. Thank you to the Gainey Family and the Teutonic Crossfit Community for CAN efforts! 

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FAST France has recently funded an Eye-Tracking study. This effort is led by leaders in their respective fields. Nadia Bahi-Buisson, a FAST Scientific Advisory Board member,  has over 250 publications and Nathalie Boddart has almost 400.

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