As a 501(c)3 organization, the PMD Foundation relies on voluntary contributions from the community to serve those affected by PMD. Our organization provides education, research, service, and advocacy to families affected by Pelizaeus-Merzbacher Disease.
The PMD Family Network is open to any parent/legal guardian or sibling that is interested in accessing our advocacy services and programs.
The Leukodystrophy Center at Children’s Hospital of Philadelphia (CHOP) offers various clinical and research options that may be of interest to your family.
Behind the PMD Foundation is a group of people deeply committed to the families we serve. Our Board combines lived experience of PMD and professional expertise to guide our work and shape our future.
Kicks for Clark Results 2019
November 16, 2019
YouTubeThis content is blocked because YouTube cookies have not been accepted.Accept cookies The Cutler Family hosted a kickball tournament and sent a donation for $6,000!...
Keeping Our PMD and PMLD Warriors Safe
January 18, 2024
The door was closed and latched. Tom* had to back up to pull it open. There was a huge noise and he started screaming. His...
Musa’s Family Story
April 27, 2026
When I imagined the future of our little family, I pictured scraped knees, football games, graduations, and first dates. A life defined by a medical...
Ionis Pharmaceuticals Announces Clinical Study
April 22, 2024
Ionis Pharmaceuticals has announced the ORBIT Study to evaluate the safety, pharmacokinetics, and pharmacodynamics of intrathecally administered ION356 in participants with Pelizaeus Merzbacher Disease (PMD).
Important Communication Regarding Sana Biotechnology CNS Program
November 26, 2024
On Nov 4, 2024, Sana announced that they would be scaling back their Neurology program to reprioritize the resources within their pipeline. This cut includes...
How the Fernandez Family is Shining a Light on PMD
September 9, 2022
The Fernandez family lives in the Village of Haverstraw, NY. Mom, Elaine, works as a Notary and Receptionist for the Village office. Her son, Liam,...
Hope for Gabe
The Hope for Gabe annual golf tournament was held in August 2019. Gabe VandenBerg’s family and friends have hosted thIs annual golf tournament for the...
Help Shape PMD Educational Materials for Future Nurses
January 12, 2021
We are working together with PMD Foundation Board Member Angela Chlebowski to help her reach the families she needs to conduct a short informational survey....
Hearts and Soles for PMD: 2023 Run, Walk or Roll...
October 11, 2023
Event organizers had full confidence in the PMD Warrior teams when they increased this year’s Run, Walk or Roll fundraising goal from $50,000 to $75,000,...
