PMSF receives a specific ICD code for Phelan-McDermid syndrome
The new code is Q93.52 and will go into effect October 1, 2023. A years-long dream has been achieved for Phelan-McDermid…
PMSF engages parent advocate with Epilepsy Foundation
What was the event? PMS mom and PMSF rep Anna Williams participated at an annual Epilepsy Foundation Research Roundtable in Washington…
New drug (JB2) has possible relevance to Phelan-McDermid syndrome
A research team at Northwestern University developed a new drug and tested it in a laboratory model of Phelan-McDermid syndrome.
NEW Quick Resource Cards
PMSF Releases the first in a series of Quick Resource Cards by Diane Linnehan, Director of Operations and Jenn Carter, Mom…
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…
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.
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?
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,…
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. …
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…