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Meet Maddie, a powerful reminder why we do this work.

The Sargent family's commitment through Maddie's Mission Foundation is helping move FAST's mission forward and lighting the way for others in the Angelman syndrome community.

Watch the video on Instagram to help spread awareness and inspire action!

Last week, FAST’s Chief Science Officer, Dr. Allyson Berent, was invited to speak at the FDA’s Cell and Gene Therapy Roundtable, a high-level gathering of experts advising new FDA Commissioner Dr. Marty Makary. 

As both a parent and a scientist, Allyson shared how the Angelman syndrome community is advancing promising therapies through family-driven funding and research partnerships. Her remarks underscored a key message: families are not just participants; they are driving scientific breakthroughs. 

This kind of visibility at the national level reflects the growing momentum behind AS research and the power of our community to shape the future of treatment. 

Watch the roundtable (catch Allyson at 1:23:44):

Whether you’re a parent, caregiver, clinician, or researcher, being at the FAST Global Science Summit & Gala is more than just attending an event. It’s about feeling connected, inspired, and energized by real progress.

Thanks to the generosity of Maddie’s Mission Foundation, FAST is offering two types of travel assistance awards to help our community gather in Orlando this November: 

Parent & Caregiver Scholarships 

FAST wants to ease the financial burden of attending, so you can focus on what matters most: 

• Airfare + Hotel for up to two people 
• Gala tickets for up to two 21+ guests and full Summit access 
• Ground transport + meals during the event

Apply by June 18:

Professional Travel Awards 

Contribute your expertise, expand your network, and stay at the forefront of AS research:

• Airfare and hotel for one attendee 
• Summit registration, including expert-only sessions 
• Gala access and networking with the global AS community 

Apply by June 18:

FAST has awarded its first Innovative Seed Grant to Dr. Rachel Cunningham and Dr. Jennifer Adair for a bold new approach to gene therapy in Angelman syndrome. Their research uses a person’s own blood-forming stem cells (hematopoietic stem cells, or HSCs), edited with gold nanoparticles instead of viruses or chemotherapy, to correct the genetic defect at the root of AS.

If successful, this could lead to a safer, same-day gene therapy that is more scalable and accessible for families.

Read more:

FAST is proud to welcome Dr. Nick France, a world-renowned leader in rare disease drug development, to our Board of Directors.

With more than 20 years of experience across gene therapy, small molecules, and genomic medicine, Dr. France has led therapeutic development at every stage, currently serving as VP and Global Head of Neurology & Genomic Medicines Development at Alexion, AstraZeneca Rare Disease.

He brings not only deep scientific and clinical expertise, but also a track record of shaping strategy and advancing treatments that change lives. His leadership will help drive FAST’s mission to deliver meaningful therapies to the Angelman syndrome community.

Read the full announcement:

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