Exciting News: The Phelan-McDermid Syndrome DataHub is Now Available in Spanish!
At the Phelan-McDermid Syndrome Foundation, we are committed to making resources accessible to all families in our community. That’s why we’re…
An Important Announcement from Our CEO, Ronni Blumenthal
A Message from Our CEO: Preparing for a New ChapterIt is with both gratitude and a sense of celebration that we…
Jaguar Gene Therapy Shares New Community Letter and FAQ with Latest Jag201 Clinical Study Details on ClinicalTrials.gov
Important Links:Updated Community Letter & FAQ from Jaguar Gene Therapy (11/5/24)Updated information is highlighted in blueJAG201 Clinical Study Record on ClinicalTrials.govJaguar's…
November is Epilepsy Awareness Month
Epilepsy is one of the most common neurological disorders, impacting millions worldwide, including many in the Phelan-McDermid syndrome community. Approximately 50%…
Welcoming Dr. Lauren Schmitt, PMSF’s New Chief Science Officer
After a very rigorous process with several excellent candidates, we are very excited to welcome Dr. Lauren Schmitt to the PMSF…
PMSF 2024 Grant Award Recipients
In January 2023, PMSF launched its research grants program to fund highly motivated scientists studying Phelan-McDermid syndrome. Our goal was to…
Endure4Eden: A 24-Hour Golf Challenge to Support the Phelan-McDermid Syndrome Foundation
We are excited to announce the upcoming Endure4Eden fundraiser, organized by Philip Robertson and his team, to support the Phelan-McDermid Syndrome…
Advocacy Story: Because Everyone Deserves Dignity.
Chrissy & Alaina speaking at the ground breaking for 1st rest stop in TN by Chrissy HoodWhen a family prepares to…
PHELAN LUCKY Sets Sights on $1 Million Goal
Over the past decade, more than 59,000 PHELAN LUCKY shirts have found homes in 33 countries across the globe. This has not only…