A big thank you to the PMD community as we are off to another strong start to the year from a fundraising perspective!
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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.
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January 2024 – The Board of Directors of the PMD Foundation is pleased to announce the transition for the role of Board Chair. Storm Greenway is stepping into the role, following in the footsteps of Dave Manley, who served on the PMD Foundation Board for 20 years.
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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 grandmother found him still in his wheelchair, crumpled at the bottom of the stairs.
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A big thank you to the PMD community as we finished another successful year!
We raised just under $75,000 in 2023, crossing the finish line with $56K from our Run, Walk, or Roll fundraiser in September and $18K from general fundraising and Giving Tuesday.
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Thanks to our community's continued generosity and support, the PMD Foundation remains on solid ground midway through 2023.
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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 online on February 6, 2023, in Volume 38, Issue 1-2 of the Journal of Child Neurology.
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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 biomarkers for the grading of severity and progression of the disease.
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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 international community will share its colors to promote awareness, share stories, and shed light on the rare diseases affecting over 300 million people worldwide.
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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, is her little sunshine. He is five years old and lives with Pelizaeus-Merzbacher Disease.
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The PMD Foundation ended June 2022 with total cash of $195,823, down just over $48,000 from the end of last year given the first payment on one of our recently awarded research grants.
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Pelizaeus-Merzbacher Disease and Pelizaeus-Merzbacher-Like Disease are not impeded by geographic boundaries. Families from all over the world face PMD and PMLD challenges and many parents need help with providing for their children’s needs.
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First 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.
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Thank 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!
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On 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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The PMD Foundation is working hard to finalize and fund a Retrospective Natural History Study for PMD. This will be the biggest moment in The PMD Foundation’s History. Our commitment to getting this study done for all those with PMD past, present, and future is the most important thing we can do as a patient advocacy group in order to help researchers that are working on treatments and therapies that will help our boys and families in the future…
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Dr. Robert Skoff of Wayne State University has been a long-time researcher of Pelizaeus Merzbacher Disease (PMD) in mice. Fortunately for Dr. Skoff’s research, rodents have the same mutations as humans, exhibiting similar neurological symptoms so they can be used to study how myelin is destroyed…
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