Giving Tuesday is December 2nd and we have some exciting news!
We surpassed our Giving Tuesday match and raised $77K (exact total to be posted later). We ope you feel the appreciation for being part of
November 30, 2025
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.
Together We Are Mighty: Attending the 2025 NORD Breakthrough Summit
Together We Are Mighty: Attending the 2025 NORD Breakthrough Summit By: Meagan Hutchinson This week, I had the privilege of attending the 2025 NORD Rare
November 3, 2025
Driving Research Breakthroughs
Driving Research Breakthroughs Funding research, treatments, and cures for Phelan-McDermid Syndrome The Phelan-McDermid Syndrome Foundation is proud to launch Driving Research Breakthroughs, a new way
August 29, 2025
SPACES Webinar Series Recap: Understanding Catatonia in Autism
SPACES Webinar Series Recap: Understanding Catatonia in Autism By Meagan Hutchinson Phelan-McDermid Syndrome Foundation proudly co-sponsored the six-part “Supporting People with Autism and Catatonia through
August 27, 2025
Gene Therapy 101 Webinar Recap
In June, the Phelan-McDermid Syndrome Foundation hosted a webinar in collaboration with the American Society of Gene & Cell Therapy (ASGCT). Dr. Kimberly Goodspeed, a
August 16, 2025
2025 Shannon O’Boyle Memorial Grant Awardee
We have exciting news to share with our Phelan-McDermid syndrome community! This year’s PMSF research grant will help drive groundbreaking science forward in the area
August 14, 2025
PYC Therapeutics Update – Progress on RNA-Based Therapy for Phelan-McDermid Syndrome
The Phelan-McDermid Syndrome Foundation is committed to keeping our community informed about the latest scientific and medical research, including progress in therapeutic development and clinical
August 6, 2025
Bridging Science and Hope: Updates on the 2024 PMSF Research Grants
By Meagan Hutchinson In 2024, the Phelan-McDermid Syndrome Foundation awarded three research grants aimed not only at funding discovery but also changing lives. For families
July 30, 2025
Passport to Progress: Diane Joins Conference in Barcelona for a New Era of PMSF and Our Global Community
By Diane Linnehan, COO & Interim CEO, PMSF Diane Linnehan, the Chief Operating Officer and co-interim Chief Executive Officer of the Phelan-McDermid Syndrome Foundation, had
July 17, 2025
“Mini-Brains” and SHANK3—A New Way to Study Phelan-McDermid Syndrome in the Lab
By Meagan Hutchinson Click here to read the full publication Summary: Many parts of brain development are difficult for scientists to study, especially in individuals
July 10, 2025
Conference Updates from Dr. Lauren
Earlier this spring, Dr. Lauren traveled to the Gatlinburg Conference in San Diego, CA, and the International Society for Autism Research (INSAR) Conference in Seattle,
June 4, 2025
Diagnosing the Undiagnosed: PMSF Partnering with BioLogic Pharma Solutions to Help Improve SHANK3 Testing
https://www.healthshots.com/brand-stories/biologic-calls-for-better-genetic-testing-at-acmg-2025/ BioLogic Pharma Solutions, in partnership with Neuren Pharmaceuticals, has been on the conference tour this spring to share their research revealing the shortcomings of
May 23, 2025
Events Calendar
15 - 19 July 2026
2026 PMSF Family Conference
Gaylord Rockies Resort & convention Center, 6700 N Gaylord Rockies Blvd, Aurora, CO 80019
22 October 2026
Phelan-McDermid Syndrome Awareness Day
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
22 October 2031
Phelan-McDermid Syndrome Awareness Day
22 October 2032
Phelan-McDermid Syndrome Awareness Day
22 October 2033
Phelan-McDermid Syndrome Awareness Day
22 October 2034
Phelan-McDermid Syndrome Awareness Day
22 October 2035
Phelan-McDermid Syndrome Awareness Day
No event found!