NEW PODCAST: Convos with Dr. Kate
Our podcast is now available on major platforms, with a new episode posted on the 22nd of each month! by Dr. Kate Still, PhD, PMSF
February 9, 2023
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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Family Fundraiser: Turner’s Tribe
by Brooke Turner Jones, Mom to Turner We are excited about the prospects of PMS Awareness Day 2023, as it will be our 5th year
January 26, 2023
PMSF to co-fund Autism Science Foundation research grant
Dr. Sheng-Nan Qiao at Yale University applied to study the link between brain inflammation and regression (loss of skills) in PMS. The funded project focuses on approaches for reducing neuro-inflammation when modeling Phelan-McDermid syndrome in the laboratory.
January 11, 2023
PMSF Board of Directors 2023 Update
We are very pleased to announce the results of the December 2022 PMSF Board of Directors election results!
January 5, 2023
What are antisense oligonucleotides (ASOs)?
We’ve been hearing about antisense oligonucleotides (ASOs) in the news as a potential therapeutic for PMS. But what are they and how do they work?
December 28, 2022
PMS Medical Advisory; Catatonia and NMS
Important Message from our Medical Advisory Committee November 7, 2022 From: Alex Kolevzon, MD, PMS MAC chairperson; William Bennett, Jr, MD, MS; Elizabeth Berry-Kravis, MD,
November 8, 2022
Family Support Update
There are some big things happening in the world of Family Support! Our Family Support Specialist, Carla D’Imperio, is working on improving our Family Support Strategy by
September 29, 2022
Join us for a Patient-Focused Drug Development meeting with the FDA!
Save the date! November 8, 2022, 10 am – 3 pm ET (Please note this is election day in the U.S. Please vote early!) The
September 8, 2022
Current Clinical Trial Recruitment Announcements in Phelan-McDermid syndrome
Note: The PMSF circulates information but does not promote individual clinical trials. Deciding to enroll in a clinical trial is a personal decision. Families should
September 1, 2022
2024 PMSF International Family Conference Announcement
The PMSF International Family Conference was established in the year 2000 and has since been planned biennially on even years. As you know, COVID concerns and uncertainties caused
July 27, 2022
Applying for an ICD Code for Phelan-McDermid syndrome
PMSF has applied to the CDC for an ICD Code for Phelan-McDermid syndrome. Our Scientific Director shares why this is important for rare diseases like
July 27, 2022
Events Calendar
02 - 24 January 2025
Phelan Lucky sets sights on $1 Million Goal
22 October 2025
Phelan-McDermid Syndrome Awareness Day #PMSAD
03 December 2025
International Day of Persons with Disabilities
02 - 24 January 2026
Phelan Lucky sets sights on $1 Million Goal
22 October 2026
Phelan-McDermid Syndrome Awareness Day #PMSAD
03 December 2026
International Day of Persons with Disabilities
02 - 24 January 2027
Phelan Lucky sets sights on $1 Million Goal
22 October 2027
Phelan-McDermid Syndrome Awareness Day #PMSAD
03 December 2027
International Day of Persons with Disabilities
02 - 24 January 2028
Phelan Lucky sets sights on $1 Million Goal
22 October 2028
Phelan-McDermid Syndrome Awareness Day #PMSAD
03 December 2028
International Day of Persons with Disabilities
No event found!