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
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.
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 3/13/2025* GEODE (Gathering Evidence for Optimizing Decisions) Study Research team: Boston University’s Center for Autism Research Excellence, Dr. Ben Scott Type of
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
Katy & Sue’s Birthday
We are thrilled to invite you to join us in celebrating a momentous milestone – the 70th birthdays of two INCREDIBLE women who have made
September 26, 2023
How are Phelan-McDermid Syndrome and Autism Related?
A large percentage (~75-80%) of people with a Phelan-McDermid syndrome diagnosis also have a diagnosis of autism spectrum disorder. This article explains why these two
September 25, 2023
Phelan Lucky is open until 8/22/23
by: Jen Randolph, PMSF Member & Donation Coordinator and Creator of Phelan-Lucky. THE WAIT IS OVER! 🍀 DATES: July 31st thru August 22nd The highly
July 31, 2023
2024 PMSF International Family Conference
by: Ronni Blumenthal, Phelan-McDermid Syndrome Foundation CEO. Save the Date for the 2024 Phelan-McDermid Syndrome Foundation International Family Conference We are so excited to announce
July 21, 2023
Events Calendar
22 October 2025
Phelan-McDermid Syndrome Awareness Day #PMSAD
03 December 2025
International Day of Persons with Disabilities
02 - 24 January 2026
Phelan Lucky sets sights on $1 Million Goal
22 October 2026
Phelan-McDermid Syndrome Awareness Day #PMSAD
03 December 2026
International Day of Persons with Disabilities
02 - 24 January 2027
Phelan Lucky sets sights on $1 Million Goal
22 October 2027
Phelan-McDermid Syndrome Awareness Day #PMSAD
03 December 2027
International Day of Persons with Disabilities
02 - 24 January 2028
Phelan Lucky sets sights on $1 Million Goal
22 October 2028
Phelan-McDermid Syndrome Awareness Day #PMSAD
03 December 2028
International Day of Persons with Disabilities
02 - 24 January 2029
Phelan Lucky sets sights on $1 Million Goal
No event found!