Hi Cure,

Have you seen our new weekly video content? We’re releasing more FAST Facts episodes with Easton Bryant and FAST Athletes videos — you can check them out on our Facebook, Instagram, or TikTok.

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

This week we are highlighting an interesting publication from Drs. Kiyoshi Egawa and Miho Watanabe from the Hokkaido University Graduate School of Medicine and Hamamatsu University School of Medicine, respectively, investigating a potential downstream therapeutic approach in a mouse model of Angelman syndrome — which falls under Pillar 3 of our Roadmap to a Cure.

Read more about this study and its conclusions:

Dr. Scott Dindot, a leader in Angelman syndrome research, and a long time collaborator with FAST, has played a huge role in helping to advance the drug development pipeline towards our ultimate mission: to bring transformative therapeutics to those living with AS. Dr. Dindot recently received the Texas A&M University Inaugural Chancellor’s Innovation Award for his work on developing an Antisense Oligonucleotide (ASO) for human application in Angelman syndrome.

The Chancellor’s Innovation Award recognizes one employee from an institution within the Texas A&M University System who has made a remarkable achievement through their discovery and invention. We are so proud of Dr. Dindot, who is being recognized for his incredible work in AS.

Thank you, Dr. Dindot, for your dedication to our community and for always being a part of our fight for a better life for our loved ones. We are grateful to you. 

Read the full article:

“When I think about how race plays a role for Chloe, I do know there are differences for her and that it still plays a significant role for all of us. At least one of my other adult children experienced racial profiling in an Illinois fast-food restaurant just recently. Racial inequity is still going on, so, yes, it will play a role for Chloe as well, and maybe even a stronger one because of her disability. Hopefully, we can give her enough tools and training so that she can live her best life even if a cure never happens. And believe me, I realize not everyone has these resources. All Black and Brown families should have access to the latest research and therapies.”

That’s from a terrific article, which can be found here, written by Leonard Boston. He and his wife, LaTrieva, are the parents of Chloe, who lives with Angelman syndrome.

The issue of racial and ethnic representation in the Angelman community is an important one at FAST, and will be the topic of Alana’s fireside chat, with parent Taylor Geathers, this Sunday, April 30th at 3pm ET (New York).

Register for this Sunday’s fireside chat:

The Global Angelman Syndrome Registry (GASR) is a global initiative to collect and collate data on individuals diagnosed with AS worldwide. Parents and caregivers drive data collection by contributing information on diagnosis, medical history, development, and more in a series of online modules. 

Capturing those caregiver-reported observations builds a complete picture of what AS looks like across genotypes and age groups.

This data can then assist pharmaceutical companies in understanding the scope of the disease based on data contributed by those that know the patients best: Caregivers.

This is a critical initiative, so please help GASR collect data by registering or logging now:

It may have been snowing in South Dakota earlier this month, but on April 7, things were heating up in Webster, SD as Alyssa and Joel Shoemaker hosted their 8th annual Crawfish Boil fundraising event! 

These fabulous parents of Drake, who lives with Angelman syndrome, have been fundraising for the AS community for 8 years. This year their Crawfish Boil raised over $32,000 — which brings their fundraising total benefitting FAST to over $80,000!

Our 2023 CAN Fundraising goal is $1,000,000, and we are already 17% of the way there! Check out our fundraising page to see:

• Fundraising Tips — How to ask, show gratitude, and have fun!
• Toolkit — Event planning docs, templates, videos
• 2023 CAN rules — CAN campaigns that raise a minimum of $1,000 are eligible for a gift 
• Events calendar — to see all of the events happening, there may be one in your area! Hosting an event? Submit your info here and let's discuss how FAST can help (marketing, on-site support, etc)!

Get started or continue your CAN fundraising efforts:

We’re excited to highlight more fun outdoor CAN fundraising events this spring and summer in this newsletter!

As always, please share this link with anyone in your network who would be interested in receiving our updates.