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 Food and Drug Administration (FDA) for a closed session listening session.
Read MoreEvent 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, up from $50,000 in 2022. PMD Warrior Teams crossed the finish line with $56,201 raised from sponsorships, registrations, donations, and t-shirt sales.
Read MoreWhat do you do when you beat a previous year’s fundraising goal? Double it! This year’s Run, Walk or Roll doubled its 2022 goal from $25,000 to $50,000 and exceeded expectations with $67,067 raised from sponsorships, registrations, donations, and t-shirt sales.
Read MoreWe’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 light (and yours!) with the rest of the world to build awareness of PMD and PMLD for Rare Disease Day.
Each September we honor Leukodystrophy month with our annual Run, Walk or Roll event. We invite teams to make miles towards our goal of $25,000 to help fund research for PMD treatments and therapies. 100% of registration fees go to the PMD Foundation’s work on education, research, service and advocacy for those affected by Pelizaeus-Merzbacher Disease.
Read MoreSignificantly surpassing a stretch goal of $25,000 to fund research for PMD treatment and therapies. Welcoming 360 participants from the U.S., Switzerland, and Austria who raised a grand total of $31,712.
Read MoreBrayden, who was diagnosed with PMD when he was one, received a special birthday present when his family and friends honored him with a Virtual Walk, Run and Roll to benefit the PMD Foundation and PMD Family Support.
Read MoreOn June 15, 2019, Logan Parker, Texas, and family hosted a golf outing at the beautiful golf course, Mill Creek Country Club. The weather was beautiful and 44 golfers came out to support Logan and the PMD Foundation raise money to further the mission of the foundation.
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