In breaking news regarding the treatment of Pelizaeus-Merzbacher disease (PMD), Case Western Reserve University and Ionis Pharmaceuticals, Inc. have signed an exclusive license agreement to advance and commercialize a therapeutic approach discovered by university medical researchers…
Read MoreFirst of all, thank you for your continued generosity towards the PMD Foundation in 2021! The Foundation took in donations of over $64,000 for the year, close to 2020’s level.
Read MoreEach 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 MoreSara Stuckey shares the story of her son, Mason:
Mason began displaying symptoms around 4 - 5 months old. He was initially diagnosed with cerebral palsy just before his second birthday. However, two months ago, we received the diagnosis of SPG2 from the neurologist although the genetic counselor believes it is PMD Null. Mason will be 4 years old in November.
Read MoreFrom Poland, Alicja Hałąs shares the story of her son, Olaf: Olaf was born on July 25, 2013, the youngest of four children. From the very beginning, we noticed that something was wrong - his eyes were moving from side to side - nystagmus - and he wasn’t reaching milestones like his peers.
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 MoreThank you for your continued generosity towards the PMD Foundation so far in 2021! The Foundation took in donations of over $35,000 for the first eight months of 2021 given the success of the Virtual 5K and Brayden’s Walk, Run, and Roll!
Read MoreAlex and Igor were born in Brazil on November 26, 1984, and on May 23, 1989. At 14 years old, Igor presented his first symptoms and Alex at 18 years old.
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