Hi Cure,

We’re so excited to promote the FAST Athletes program, which we think will be both helpful and fun for the Angelman community!

If you’ve been inspired by the stories we shared about Rhian Adams and Deanna McCurdy in the past couple of weeks, we have a way for you to connect with them and the other FAST Athletes directly... please read on!

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

Hot off the press! A new publication in Science Translational Medicine titled “An ASO therapy for Angelman syndrome that targets an evolutionarily conserved region at the start of the UBE3A-AS transcript” discusses the extensive research behind advancing one of the first investigational molecular therapies for Angelman syndrome into clinical development (ClinicalTrials.gov, NCT04259281). 

This is a landmark paper put forward by Dr. Scott Dindot and a stellar team of researchers at Texas A&M, with multiple layers of support from FAST-affiliated people and entities — including GeneTx Biotherapeutics (which was launched from FAST), and the collaboration of the FAST FIRE Consortium. 

Click here to read a full review of the paper:

This is a full-circle moment for FAST, as it highlights yet again how important patient advocacy is in helping to shape the landscape of drug development. In fostering a space where parents, caretakers, scientists, industry, and clinicians partner together and grow, FAST is able to seed and nurture important developments such as these.

Running a race this year? Looking to challenge yourself mentally and physically? Are you seeking a creative way to raise funds and bring awareness to Angelman syndrome? 

Our FAST Athletes are here to help! 

Our Cure Angelman Now (CAN) FAST Athletes program is led by 5 elite athletes in the Angelman syndrome community, who live all over the world. These individuals bring professional expertise and experience to a wide variety of health and fitness arenas. Their goal is to empower the possibility to believe in the impossible, for you and your loved ones living with Angelman syndrome.

Through the FAST Athletes program, we invite you to start focusing on your health and wellness and these experts are here to help! 

Learn more and connect with a FAST Athlete today:

This week our 2022 CAN Grand Prize winners are visiting Yale University and Dr. Yong-Hui Jiang’s lab! 

Our top 8 fundraisers and 2 sweepstakes winners are eligible for the CAN Grand Prize. Last year, the 2021 CAN winners and FAST Board toured the UC-Davis Labs of Dr. Segal, Dr. Silverman, Dr. Anderson, and Dr. Fink in Northern California and explored Napa through food and wine.

This year, the 2022 Grand Prize winners are headed to New York City where they will experience the city with the FAST Board and Staff as well as travel to New Haven, CT to see the exciting work happening inside Dr. Jiang’s lab.

Note: Some of you might note that we were originally scheduled to visit Dr. Keung’s lab at NC State, but he now has to get ready for the arrival of his firstborn child, due any day now. Let’s send him all the best as he begins his journey as a father!

Start your CAN fundraising now to be eligible for this exclusive experience next year!

Typically, we offer our fireside chats on the 2nd Sunday of each month. We know how important both Easter and Mother’s Day are for the community so we are planning our next fireside chat for Sunday, April 30th at 3pm ET (New York).

We are excited for Alana to sit down with our community member, Taylor Geathers from North Carolina. She will share her perspective on racial and ethnic representation in the AS community and discuss how we can close these gaps so that when the time comes to administer therapeutics, every individual with AS who wants them can have access to treatments.

Stay tuned for the registration link, which will be available in a few weeks!

Check out Taylor’s community spotlight from January to learn more about her and her family:

Did you reach out to a FAST Athlete? We’re really excited for our community to take advantage of this program!

Don’t forget to share this link with anyone who would be interested in receiving our weekly newsletter.