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Take this FAST ACTION today: Follow us on Instagram if you aren't already, and keep an eye out for our International Angelman Day recap post tomorrow — your celebration might be featured!

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New FAST-Funded Publication from Dr. Albert Keung’s lab

From a FAST funded grant to Dr. Albert Keung’s lab, a recent publication was released that presents a tool that is fast, sensitive, cost-effective, and can detect even very small amounts of UBE3A protein. As the assay (tool) is refined, it holds the potential to further advance our understanding of UBE3A’s role in biological systems and continue to support the development of treatments for disorders related to UBE3A dysfunction. The publication of this paper makes the assay available to any researchers interested in looking at UBE3A protein.  This is incredible work under Pillar 4 of our Roadmap to a Cure to help with potential biomarkers and the monitoring of therapeutics in clinical trials.  


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Encoded Therapeutics Program Update

Encoded Therapeutics announced an update on their Angelman syndrome miRNA program indicating that IND-enabling studies (preclinical studies) have been initiated for their investigational gene therapy candidate (ETX201) to support a potential filing in 2026 to begin testing in humans.


Read the announcement:

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International Angelman Day Round Up

International Angelman Day was celebrated last week around the world. Communities found unique ways to bring awareness to Angelman syndrome, promote research and education, started fundraising, and honored those who lived with AS that are no longer with us. Thank you to everyone who participated in this global initiative!  

 

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Introducing the Angelman Syndrome Community Advisory Board

We are thrilled to introduce the Angelman Syndrome Global Community Advisory Board (CAB). This incredible group is made up of parent advocates and expert parents/carers who bring a wealth of personal and professional knowledge to the table. Their mission? To discuss and advise on the latest developments, challenges, and issues related to Angelman Syndrome, ensuring the voices of families are heard in key conversations. 

 

Learn more:

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FAST Global Congresses: FAST Italy + FAST Poland

On February 14-15, 2025, FAST Italy and FAST Poland hosted their first national events, bringing together researchers, clinicians, and families to advance Angelman Syndrome awareness and research.


FAST Italy’s Scientific Symposium in Monza (Milan) welcomed over 100 attendees for in-person discussions and collaboration. Meanwhile, FAST Poland’s online conference registered 164 guests, with nearly 100 joining live, ensuring broad access to vital information.


Both events, held on International Angelman Day, highlight the growing global commitment to accelerating treatments and supporting the AS community.


Read more about the FAST Italy event

Read more about the FAST Poland event

Beth Phillips Synk joins FAST Action Council

FAST is pleased to announce that Beth Phillips Synk, mother of Imogen who lives with AS, has joined the FAST Action Council. As a volunteer, we are excited for her to bring valuable insight as a caregiver for an individual living with AS, along with her professional expertise in communications in healthcare.  

 

Learn more about Beth:

Meet Beth
Our legislative priorities for the 2025 AS Congressional Advocacy Day - March 5

We are just 15 days away from our 2025 AS Congressional Advocacy Day! We have 136 registered advocates from 29 states – more than double from last year!  

 

ASF and FAST are preparing for this important day and we wanted to share with the community the legislative priorities going into March 5.   

 

Learn more about our priorities:

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