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…
Posts about legislative activities to advocate for those with Phelan-McDermid syndrome
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…
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…
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 Quick Resource Cards
PMSF Releases the first in a series of Quick Resource Cards by Diane Linnehan, Director of Operations and Jenn Carter, Mom…
Family Fundraiser: Turner’s Tribe
by Brooke Turner Jones, Mom to TurnerWe are excited about the prospects of PMS Awareness Day 2023, as it will be…
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.
CANDID Conference Resources
Topics this month in the PMSF Research Roundup: Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial.
Phelan-McDermid Syndrome Foundation Offers Travel Assistance for Clinical Research Studies
This Phelan-McDermid Syndrome Foundation Travel Assistance Program is designed to assist patients and families with the cost of travel expenses associated with the clinical research study regarding a Phelan-McDermid syndrome diagnosis.