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 from the 2024 PMSF
December 16, 2024
Read All About It!
This page is your source for all of the latest news and blog posts about Phelan-McDermid syndrome (PMS).
Join the PMSF membership to receive our emails and newsletter, it is free to join.
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 excited to announce that
November 26, 2024
An Important Announcement from Our CEO, Ronni Blumenthal
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
November 19, 2024
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 blue JAG201 Clinical Study Record on ClinicalTrials.gov Jaguar’s
October 29, 2024
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 team as our Chief
October 25, 2024
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 accelerate promising clinical research
September 10, 2024
Jaguar Gene Therapy to Initiate Inaugural Pediatric Clinical Trial Targeting Phelan-McDermid syndrome
Jaguar Gene Therapy to Initiate Inaugural Pediatric Clinical Trial Targeting Phelan-McDermid syndrome
July 9, 2024
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 Foundation. Taking place on
March 1, 2024
Protected: Jaguar Gene Therapy to Start a Clinical Trial in Phelan-McDermid syndrome
There is no excerpt because this is a protected post.
January 31, 2024
Jaguar Gene Therapy to Start a Clinical Trial in Phelan-McDermid syndrome
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.
January 31, 2024
Current Open Research
*last updated on 10/09/2026* Developmental Synaptopathies Consortium III (Natural History Study) Research team: Boston Children’s Hospital Icahn School of Medicine at Mount Sinai Rush University
January 15, 2024
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 significantly increased awareness for
October 30, 2023
Events Calendar
14 October 2026
Neuropsychiatric Illness Caregiver Support Group
17 October 2026
North Carolina Family Gathering
21 October 2026
Newly Diagnosed Caregiver Support Group
22 October 2026
Phelan-McDermid Syndrome Awareness Day
27 October 2026
Supporting Bereaved Families: Resources, Connection, & Research
01 December 2026
2026 Giving Tuesday
22 October 2027
Phelan-McDermid Syndrome Awareness Day
22 October 2028
Phelan-McDermid Syndrome Awareness Day
22 October 2029
Phelan-McDermid Syndrome Awareness Day
22 October 2030
Phelan-McDermid Syndrome Awareness Day
No event found!