Hi Cure,

Read on for key insights on clinical trials, a tee-riffic CAN event ⛳, and our Rare Compassion Program – and don't forget to sign up for our webinar with Dr. Berry-Kravis this Friday!



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

Roche has responded to the initial list of community questions. Please click below to read the full Q&A. Please also consider joining the ASF/FAST hosted webinar tomorrow on July 7 at 12pm ET with Dr. Elizabeth Berry-Kravis, a principal investigator for the Roche (Tangelo) program.

Read the Q&A:

We're breaking down some of the key players in clinical trial operations who help to ensure trials are conducted in a safe, ethical, and scientific manner. As a reminder, clinical trials can be either interventional or observational. Interventional clinical trials are studies that evaluate medical, surgical, or other interventions for treatment of a disease.

Click here to read more:

This past March, we were excited to announce FAST’s participation in the RARE Compassion Program facilitated by Global Genes. 

Kelly David, mother of Colin, who lives with AS, and Co-Vice Chair of the FAST Board of Directors, was matched with Christian Najjar, a medical student wanting a better understanding of how rare disorders affect people’s personal lives. 

Christian stated that he gained a perspective to better understand family dynamics and be able to provide more support in the form of resources for families. 

Read more about Christian’s experience and how this program helps bring awareness to AS to the next generation of medical professionals:

For the second year in a row, over 120 golfers gathered at Maple Leaf Golf Club in Linwood, Michigan in honor of Gus, who lives with Angelman syndrome. The event was made possible by sponsors, volunteers, silent auction donors, friends and family and raised $40,000 to benefit FAST!

Parents Kelsey and John Laskowski said: “We are so grateful for our community and honestly are just excited to keep this tradition going year after year.” 

Thank you to the Laskowski family and their community for your commitment to FAST!

See event photos & local radio coverage:

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