Dear Friends & Family,
It's time again for $22 for 22q13, our annual campaign for the Phelan-McDermid Syndrome Foundation in Shannon's memory. This year she would have turned 26 — our third birthday without her here to celebrate, though her laughter and spirit still find their way into everything we do.
Because of you, we raised more than $47,000 last year! These gifts are now at work through the Shannon O'Boyle Memorial Neuropsychiatric Illness Grant, a $100,000 award given annually to advance research about neuropsychiatric illness in Phelan-McDermid syndrome. Dr. Jonathan Santoro, Associate Professor of Neurology and Pediatrics at Children’s Hospital of Los Angeles, received the 2026 award for his project titled “Diagnostic Biomarkers in Phelan-McDermid Syndrome-Associated Neuropsychiatric Disease". For additional details about his grant, you can check out the PMSF website and the PMSF podcast episode featuring Dr. Santoro. The past awardees have made incredible progress. Dr. Milena Andzelm has been able to identify links between the immune system and neuropsychiatric illness. Dr. Pilar Trelles and Tess Levy have refined a measurement tool that captures symptoms of neuropsychiatric illness and their change. These studies have been shaping our understanding and care of individuals with Phelan-McDermid syndrome with neuropsychiatric illness.
This summer, PMSF hosted a Scientific Summit on Loss of Skills, Regression, and Neuropsychiatric Illness with the top researchers and clinicians in these areas. It is clear how much is needed in these often overlapping, but distinct areas. Thus, this year PMSF will continue to offer the Shannon O’Boyle Memorial Award and broaden the scope to also include loss of skills, a phenomenon so many families have witnessed their loved ones with Phelan-McDermid syndrome experience. Every gift helps carry this work forward for families still waiting on answers.
Not a day goes by that we don't think of Shannon. But we also see her in the researchers she has motivated and the progress still ahead.
Curious if your employer matches gifts? A quick check with HR could double your impact. Tax ID#: 04-3673104.
With gratitude,
The O'Boyle Family
Checks can be made payable to The Phelan-McDermid Syndrome Foundation — please note "In Memory of Shannon O'Boyle" in the memo — and mailed to:
Phelan-McDermid Syndrome Foundation
8 Sorrento Drive
Osprey, FL 34229