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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
Exciting News: The Phelan-McDermid Syndrome DataHub is Now Available in Spanish!

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…

Continue ReadingExciting News: The Phelan-McDermid Syndrome DataHub is Now Available in Spanish!
An Important Announcement from Our CEO, Ronni Blumenthal

An Important Announcement from Our CEO, Ronni Blumenthal

A Message from Our CEO: Preparing for a New ChapterIt is with both gratitude and a sense of celebration that we…

Continue ReadingAn Important Announcement from Our CEO, Ronni Blumenthal
Jaguar Gene Therapy Shares New Community Letter and FAQ with Latest Jag201 Clinical Study Details on ClinicalTrials.gov

Jaguar Gene Therapy Shares New Community Letter and FAQ with Latest Jag201 Clinical Study Details on ClinicalTrials.gov

Important Links:Updated Community Letter & FAQ from Jaguar Gene Therapy (11/5/24)Updated information is highlighted in blueJAG201 Clinical Study Record on ClinicalTrials.govJaguar's…

Continue ReadingJaguar Gene Therapy Shares New Community Letter and FAQ with Latest Jag201 Clinical Study Details on ClinicalTrials.gov
November is Epilepsy Awareness Month

November is Epilepsy Awareness Month

Epilepsy is one of the most common neurological disorders, impacting millions worldwide, including many in the Phelan-McDermid syndrome community. Approximately 50%…

Continue ReadingNovember is Epilepsy Awareness Month
Welcoming Dr. Lauren Schmitt, PMSF’s New Chief Science Officer

Welcoming Dr. Lauren Schmitt, PMSF’s New Chief Science Officer

After a very rigorous process with several excellent candidates, we are very excited to welcome Dr. Lauren Schmitt to the PMSF…

Continue ReadingWelcoming Dr. Lauren Schmitt, PMSF’s New Chief Science Officer
PMSF 2024 Grant Award Recipients

PMSF 2024 Grant Award Recipients

In January 2023, PMSF launched its research grants program to fund highly motivated scientists studying Phelan-McDermid syndrome. Our goal was to…

Continue ReadingPMSF 2024 Grant Award Recipients
Endure4Eden: A 24-Hour Golf Challenge to Support the Phelan-McDermid Syndrome Foundation

Endure4Eden: A 24-Hour Golf Challenge to Support the Phelan-McDermid Syndrome Foundation

We are excited to announce the upcoming Endure4Eden fundraiser, organized by Philip Robertson and his team, to support the Phelan-McDermid Syndrome…

Continue ReadingEndure4Eden: A 24-Hour Golf Challenge to Support the Phelan-McDermid Syndrome Foundation
Advocacy Story: Because Everyone Deserves Dignity.

Advocacy Story: Because Everyone Deserves Dignity.

Chrissy & Alaina speaking at the ground breaking for 1st rest stop in TN by Chrissy HoodWhen a family prepares to…

Continue ReadingAdvocacy Story: Because Everyone Deserves Dignity.
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Copyright © 2024 Phelan-McDermid Syndrome Foundation. All rights reserved. Any information provided to members or the general public is provided for educational purposes only, and is not intended to replace professional advice from doctors or therapists.

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