Why Sharing Clinical Trial Experiences Can Harm Research
By: Lauren Schmitt, PhD, Chief Science Officer, PMSFDate: December 22, 2025 How Families Can Help Protect the Path to New Treatments…
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…
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…
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…
Raising Hope Through Movement 2025
We’re on the move—are you with us?From May 13–25, 2025, the Phelan-McDermid Syndrome Foundation (PMSF) is launching our second Raising Hope…
Class I vs. Class II Deletions: What’s the Difference?
In Phelan-McDermid syndrome, you are likely familiar with the terminology and differences between SHANK3 deletions, SHANK3 variations, and even ring chromosomes.…
PYC Therapeutics Webinar Takeaways
We are so grateful to PYC Therapeutics for their informative webinar on PYC-002, an RNA-based gene therapy, held on March 13,…
2023 PMSF Grant Awardees – Round-Up
Over the past month, I’ve had the opportunity to interview each of our 2023 PMSF Grant Awardees for our podcast, The…
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…