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.
Executive Director Letter April 2018
April 10, 2018
I’m nearing my first anniversary as being the PMD Foundation’s Executive Director and I can tell you I love my job, it is my dream...
Newsletter – Fall 2017
October 8, 2017
In this issue: Devin Joseph, 3rd Annual Gabe VandenBerg Golf Outing, Research: Why We Do What We Do, Letter from the Chair, Fundraising, Events, Fun...
To the Disease That Tries to Rob My Son of...
December 15, 2015
You make my life hard, really hard, and that is an understatement. But the one who you really make suffer the most is my innocent...
Rare Disease Day Smile-A-Thon for PMD and PMLD
January 27, 2022
We’re holding a Smile-a-thon inspired by our PMD and PMLD kids – when they smile, it lights up the room. We want to share their...
PMD Foundation Celebrates 2019 Rare Disease Day
March 1, 2019
On February 28, 2019, the PMD Foundation celebrated Rare Disease Day. In an effort to raise awareness about rare diseases, Rare Disease Day was created...
Q3 Treasurer’s Report
November 3, 2025
A big thank you to the PMD community, as we continue to make strides in 2025! We have raised almost $38,000 in the first 9...
Q2 Treasurer’s Report: Starting Strong, Thanks to You!
July 24, 2025
A big thank you to the PMD community as 2025 is off to a good start from a fundraising perspective! We have raised almost $14,000...
Q1 Treasurer’s Report: 2025 Off To a Strong Start
April 15, 2025
A big thank you to the PMD community as 2025 is off to a great start from a fundraising perspective! We have raised almost $12,000...
Q1 Treasurer’s Report: 2024 Off to a Strong Start
April 17, 2024
A big thank you to the PMD community as we are off to another strong start to the year from a fundraising perspective!
