Dear Friends and Family,

As impossible as it seems, we are celebrating Shannon’s 21st birthday this month. In honor of her birthday, we are launching our annual $22 for 22q13 campaign.

The past year has posed many challenges for all of us. For Shannon, being out of school and away from her routine and therapies was especially difficult. She is thrilled to be back to school full-time and getting a break from her mom. Thankfully, we had some wonderful caregivers that took her out for drives or hikes. (No 21-year-old should be stuck home with her mom all day for months and vice versa!) 

Despite the past year’s difficulties, we are happy to share that the Phelan-McDermid Syndrome Foundation has made significant progress this year. Thanks to funds raised by generous donors like you, PMSF has been able to grow its staff. Our most recent addition, Dr. Kate Still, is our first Scientific Director. Dr. Still will assume Megan’s research related responsibilities which will allow Megan and Michael to focus on preparing for Shannon’s services and vocational opportunities after she finishes school in August 2022.

Speaking of research, the AMO clinical trials are moving to the next stage which is exciting as it has shown the ability to lessen seizures in some patients. In addition, another trial will be starting with Neuren Pharmaceuticals later this year. The NIH natural history study that Shannon is participating continues to reveal more about the syndrome and has led to additional research.

Michael continues to serve on the PMSF Board of Directors helping the Foundation continue to provide support for families and researchers. Megan is still loves working at RARE-X, a non-profit working remove barrieres to the development of treatments for rare diseases.

Because of your generosity the PMS Foundation has been able to grow their team and support research that we hope will lead to treatments to improve Shannon’s and other’s quality of life. We greatly appreciate your continued support and hope you will donate in honor of Shannon.

Thank you,
Megan, Michael, Kevin, Sean, and Shannon (and Petunia)

If you prefer, you can send a check payable to: The Phelan-McDermid Syndrome Foundation, in honor of Shannon O’Boyle.

Phelan-McDermid Syndrome Foundation

8 Sorrento Drive

Osprey, FL 34229

Make your donation go twice as far. Many companies match donations made by their employees to our organization. Reach out to your HR department to see if your company will match your donation. Our Tax ID# is: 04-3673104