This page is your source for all of the latest news and blog posts about Phelan-McDermid syndrome (PMS).
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At the Phelan-McDermid Syndrome Foundation, we are committed to making resources accessible to all families in our community. That’s why we’re excited to announce that
A Message from Our CEO: Preparing for a New Chapter It is with both gratitude and a sense of celebration that we share the news
Important Links: Updated Community Letter & FAQ from Jaguar Gene Therapy (11/5/24) Updated information is highlighted in blue JAG201 Clinical Study Record on ClinicalTrials.gov Jaguar’s
After a very rigorous process with several excellent candidates, we are very excited to welcome Dr. Lauren Schmitt to the PMSF team as our Chief
In January 2023, PMSF launched its research grants program to fund highly motivated scientists studying Phelan-McDermid syndrome. Our goal was to accelerate promising clinical research
Jaguar Gene Therapy to Initiate Inaugural Pediatric Clinical Trial Targeting Phelan-McDermid syndrome
We are excited to announce the upcoming Endure4Eden fundraiser, organized by Philip Robertson and his team, to support the Phelan-McDermid Syndrome Foundation. Taking place on
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We have breaking news! Jaguar Gene Therapy has received approval from the FDA to conduct a gene therapy clinical trial in Phelan-McDermid syndrome.
This is a major milestone for our community and for drug development in Phelan-McDermid syndrome! This will be the first trial aiming to target genetic underpinnings of Phelan-McDermid syndrome.
*last updated on 5/21/2025* Phelan-McDermid Syndrome Inventory of Psychiatric Symptoms (PIPS) *This study is supported by the 2024 Shannon O’Boyle Memorial Neuropsychiatric Illness Grant* Research
Over the past decade, more than 59,000 PHELAN LUCKY shirts have found homes in 33 countries across the globe. This has not only significantly increased awareness for
We are thrilled to invite you to join us in celebrating a momentous milestone – the 70th birthdays of two INCREDIBLE women who have made
