Hi Cure,

As the days get warmer and the evenings get lighter here in North America, we’re excited to spend more time outside with the FAST community!

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 a new publication from Dr. Anne Anderson’s lab at Baylor College of Medicine that evaluates EEG as a tool, or biomarker, to objectively measure therapeutic efficacy in Angelman syndrome. This work falls within FAST’s Pillar 4 — Accelerating and Preparing for Clinical Trials in our Roadmap to a Cure 2.0.   

This work is particularly exciting for our community right now, given the multiple ongoing and emerging clinical trials. This study illustrates that certain aspects of an EEG can be quantified, and they may be found to change in response to a therapeutic intervention. This can potentially be used in trials as a biomarker to measure changes in AS after treatment.

Read more:

There are four active clinical trials for Angelman syndrome, which is very exciting! New site locations have recently been added to the ongoing studies, and additionally, a new observational study was just announced.

Check out more information about these clinical trials:

Last month, the Kowalski family out of Massachusetts hosted a virtual wine fundraising event to benefit FAST. Their brand, Skating Angels, raised over $4,500 in honor of their son, Bruce, who lives with Angelman syndrome. 

Parents Danielle and Jeff partnered with Charles Krug Winery (Napa’s oldest winery estate) and SLL Engraving to host a very unique event. Over 75 participants gathered in a Zoom room, some with their exclusive Skating Angels glass, where they watched an inspirational video about Bruce, got a toast from Allyson, our chief science officer, and enjoyed learning and tasting through a sample of wines. A special cheers of gratitude to this amazing family for supporting our 2023 CAN fundraising campaign! 

The Skating Angels team isn’t done fundraising yet, though! Their next event will be a hockey tournament on Saturday, May 6, 2023 in Boston, MA — all adult hockey players and fans are welcome to join!

Learn more and attend if you’re in the area:

In February 2023, Amazon.com retired their charitable giving program called “Amazon Smile.” We want to provide you with a couple of new alternatives which take just a few clicks to set up!

Thank you in advance as every dollar makes a difference!

1. Walmart Round Up — Sign up to round up for FAST:

2. Convert Microsoft Rewards to dollars for FAST — watch this video to learn how:

Thanks for reading, and please share this link with anyone in your network who would be interested in receiving our weekly newsletter!