Hi Cure,

With four active clinical trials, new site locations, and more observational studies, it’s a really exciting time in Angelman syndrome research. 

That’s why we created a new webpage and Facebook group to provide information and resources to the global AS 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 newly published, FAST-funded work by Drs. Jessica Duis and Jill Silverman looking at quantitative measures of motor development in individuals living with Angelman syndrome. Work like this is timely as clinical trials continue to establish robust, quantitative outcome measures that can be routinely used to test for meaningful change following treatment. The assessment of gait has been top of mind as we look to measure meaningful change over time in those living with Angelman syndrome.

This study compared gait and motor measures in a total of 19 individuals living with AS to age-matched controls using either a walking mat, an activity monitor, a physician’s exam or combination of each.

Read more about this FAST-funded study:

FAST is excited to announce that we have created a space dedicated to Clinical Trials for Angelman syndrome on Facebook and updated our clinical trials & studies page on our website.

The group will serve as a global hub for anything relating to clinical trials for Angelman syndrome and the translational research needed to bring it all to fruition! As a member of this group, you will have access to up-to-date information, resources, and education, as well as the opportunity to ask questions and participate in discussions on related topics.

Based on feedback from the community, FAST has updated our clinical trials and studies page to mirror what is on clinicaltrials.gov and we organized the information to make it a valuable resource that is able to be easily searched and digested.

Join the group today:

See the active clinical trials & studies for AS:

April’s fireside chat is next Sunday at 3pm ET (New York)! Alana will be joined by Taylor Geathers to discuss her perspective on racial and ethnic representation in the AS community and 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.

Join us — let’s fill the Zoom room to discuss this important topic! 

Register now:

Save the date: The 16th Annual FAST Global Science Summit & Gala will be in Miami, Florida on November 10-11th!  

At the Global Science Summit, learn about the latest promising translational research developments and exciting therapeutics in the drug development pipeline for Angelman syndrome. Then, kick up your heels with the AS community and celebrate our progress at the Gala!

Registration opens August 1st!

• The Global Science Summit will once again be free to attend, with a virtual option available
• Tickets will go on sale for the Gala at an early bird price of $175 
• Scholarship applications will open and Gala ticket giveaway opportunities will be announced

Click here to watch last year’s Global Science Summit & Gala:

We hope you’ll join us on Zoom next Sunday for our April fireside chat!

As always, please share this link with anyone in your network who would be interested in receiving our weekly newsletter!