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.
PMD Foundation Committed $100,000 to 2-Year Research Grant in 2020...
March 17, 2021
$66,528 raised this year despite canceling key fundraising events Board of Directors Treasurer Doug Harter shares his 2020 financial recap: First of all, thank you...
PMD Foundation Awards $200,000 in Grant Funding for Pelizaeus-Merzbacher Disease...
June 2, 2022
NEW JERSEY - With compelling competition for its research grant, the PMD Foundation is pleased to announce the unprecedented funding of two research projects totaling...
PMD Foundation Announces New Leadership
January 18, 2024
January 2024 – The Board of Directors of the PMD Foundation is pleased to announce the transition for the role of Board Chair. Storm Greenway...
PMD Foundation Announces International Natural History Study on Individuals with...
August 22, 2019
SALADO, TX | August 21, 2019 -- The PMD Foundation, in partnership with Children’s Hospital of Philadelphia (CHOP) and an international consortium of leukodystrophy clinicians...
Pelizaeus-Merzbacher Disease Patient-led Listening Session
March 27, 2024
On August 22, 2023, six PMD families from across the country, and Dr. Adeline Vanderver, MD, Children’s Hospital of Philadelphia (CHOP), met with the US...
Nicolas Candelaria Receives His COVID-19 Vaccine
His Parents Bob and Teresa Share What It’s Like For Someone with PMD to Get Vaccinated Part 1 – Nicolas has a history of choking...
New Research Paper on the Caregiver Assessment of Pelizaeus-Merzbacher Disease
May 17, 2023
Pelizaeus-Merzbacher Disease: A Caregiver Assessment of Disease Impact has been published with support from the PMD Foundation. The article from Ionis Pharmaceuticals was first published...
Myelin Research Identifies PMD Subgroups
February 1, 2023
Medical researchers studying emerging therapeutic approaches to help treat Pelizaeus-Merzbacher Disease (PMD) have announced the development of a system to identify distinct clinical cohorts and...
#LightUpForRare on Rare Disease Day for PMD and PMLD
Each year on the last day of February, the Rare Disease Community comes together for Rare Disease Day. This year, on February 28, 2023, the...
