From Awareness to Action: Advocacy for Our Phelan-McDermid Syndrome Community
This is a companion piece to our podcast episode, which we recommend listening to or viewing before reading! But if you do not have the
May 11, 2025
Read All About It!
This page is your source for all of the latest news and blog posts about Phelan-McDermid syndrome (PMS).
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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 Through Movement fundraiser—a
April 30, 2025
Breaking Down NIH Funding for Research
With a past annual budget of nearly $50 billion (yes, that’s with a B!), the National Institute of Health (NIH) is the largest source of
April 3, 2025
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. But what about Class
March 28, 2025
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, 2025, and co-hosted by
March 21, 2025
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 Phelan-McDermid Podcast: Sharing Research,
March 10, 2025
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 happen. A recent study
February 27, 2025
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 on behalf of clinical
January 27, 2025
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 (PMS-NCG). The Pharmacological Recommendations
December 27, 2024
Meet Denise Croden: President of the PMSF Board of Directors
Name: Denise Croden Time Served on the Board: Since June 2021 Board Role: President Denise’s journey with PMSF began as an extension of her volunteer
December 23, 2024
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 from the 2024 PMSF
December 16, 2024
Exciting News: The Phelan-McDermid Syndrome DataHub is Now Available in Spanish!
At the Phelan-McDermid Syndrome Foundation, we are committed to making resources accessible to all families in our community. That’s why we’re excited to announce that
November 26, 2024
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!