Clinic and Research Visit Ready: New PMSF Resources for Families
By Lauren Schmitt, PhDDate February 25, 2026Everyday, our families are taking their loved ones to clinic appointments, research visits, or under…
Welcome Robbie Baker: Getting to Know PMSF’s New CEO
By: Amanda Bergen, Director of Communications, PMSFFebruary 16, 2026We are excited to officially welcome Robbie Baker as the new Chief Executive…
Rare Disease Day 2026: Raising Awareness for Phelan-McDermid Syndrome
By: Meagan Hutchinson, Science & Research Administrator, PMSFFebruary 5, 2026Every year on the last day of February, the global rare disease…
Early Metformin Treatment in a SHANK3 Mouse Model
In a recent preclinical study, researchers at McGill University found that metformin (an FDA-approved treatment for type 2 diabetes) improved behavior…
NNZ-2591 Phase 2 Publication
By Lauren Schmitt, PhDJanuary 12, 2026With Neuren's Phase 3 clinical trial for NNZ-2591 now open for enrollment, the recent publication of…
Registration Is Open: What to Know About the 2026 PMSF Family Conference
Registration is officially open for the 2026 PMSF Family Conference, The Climb We Make Together, Presented by Neuren Pharmaceuticals, and we’re…
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…
Why Nutrition Matters in Phelan-McDermid Syndrome
Why Nutrition Matters in Phelan-McDermid Syndrome By: Meagan Hutchinson, Science & Research Administrator, Phelan-McDermid Syndrome FoundationDecember 18, 2025Nutrition plays a critical…
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…
Driving Research Breakthroughs
Driving Research Breakthroughs Funding research, treatments, and cures for Phelan-McDermid SyndromeThe Phelan-McDermid Syndrome Foundation is proud to launch Driving Research Breakthroughs,…