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Protected: Diagnosing the Undiagnosed: PMSF Partnering with BioLogic Pharma Solutions to Help Improve SHANK3 Testing

Protected: 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…

Continue ReadingProtected: Diagnosing the Undiagnosed: PMSF Partnering with BioLogic Pharma Solutions to Help Improve SHANK3 Testing
Raising Hope Through Movement 2025

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…

Continue ReadingRaising Hope Through Movement 2025
Class I vs. Class II Deletions: What’s the Difference?

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.…

Continue ReadingClass I vs. Class II Deletions: What’s the Difference?
PYC Therapeutics Webinar Takeaways

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,…

Continue ReadingPYC Therapeutics Webinar Takeaways
2023 PMSF Grant Awardees – Round-Up

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…

Continue Reading2023 PMSF Grant Awardees – Round-Up
Epilepsy and Seizure Update from the Natural History Study

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…

Continue ReadingEpilepsy and Seizure Update from the Natural History Study
A Pilot Study Investigates a New Potential Treatment for Seizures in Phelan-McDermid Syndrome

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…

Continue ReadingA Pilot Study Investigates a New Potential Treatment for Seizures in Phelan-McDermid Syndrome
Updates to Pharmacological Recommendations for the Management of Phelan-McDermid syndrome

Updates to Pharmacological Recommendations for the Management of Phelan-McDermid syndrome

We are excited to release updates to our Pharmacologic Recommendations, which were recently finalized by our Phelan-McDermid Syndrome Neuropsychiatric Consultation Group…

Continue ReadingUpdates to Pharmacological Recommendations for the Management of Phelan-McDermid syndrome
Meet Denise Croden: President of the PMSF Board of Directors

Meet Denise Croden: President of the PMSF Board of Directors

Name: Denise CrodenTime Served on the Board: Since June 2021Board Role: PresidentDenise’s journey with PMSF began as an extension of her…

Continue ReadingMeet Denise Croden: President of the PMSF Board of Directors
A Year-End Gift: 2024 PMSF Family Conference Recordings Now Available

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…

Continue ReadingA Year-End Gift: 2024 PMSF Family Conference Recordings Now Available
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