Epilepsy and Seizure Update from the Natural History Study
Seizures are a big concern for families with children with Phelan-McDermid syndrome, but it's not always clear when or why they…
A Pilot Study Investigates a New Potential Treatment for Seizures in Phelan-McDermid Syndrome
This was written by PMSF to provide a summary of information in an accessible way for parents. PMSF does not speak…
Updates to Pharmacological Recommendations for the Management of Phelan-McDermid syndrome
We are excited to release updates to our Pharmacologic Recommendations, which were recently finalized by our Phelan-McDermid Syndrome Neuropsychiatric Consultation Group…
Meet Denise Croden: President of the PMSF Board of Directors
Name: Denise CrodenTime Served on the Board: Since June 2021Board Role: PresidentDenise’s journey with PMSF began as an extension of her…
A Year-End Gift: 2024 PMSF Family Conference Recordings Now Available
As we wrap up 2024, we’re thrilled to share a special gift with our PMSF community: access to all the recordings…
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…
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…
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…