SALADO, TX | August 21, 2019 -- The PMD Foundation, in partnership with Children’s Hospital of Philadelphia (CHOP) and an international consortium of leukodystrophy clinicians and researchers, announced today that they have launched an initiative to collect robust natural history data on individuals with Pelizaeus-Merzbacher Disease (PMD) using a CHOP-based patient registry as a platform.
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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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On June 16th I attended the conference Leukodystrophy: Current, Novel, and Future Therapies, hosted by McGill University Children’s Hospital and Dr. Geneviève Bernard in Montréal, Quebec. It was a busy day, with updates and information about a number of leukodystrophies, including PMD.
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When trying to explain our experience to friends and family upon our return I used the following analogy: If you owned a Lamborghini and it needed service you could take it to your local auto repair garage. It has tires and a motor like the other cars they work on…. but they do not have the specific training or tools and experience to properly service your unique Lamborghini.
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The PMD Foundation is looking for volunteers to assist with grant research. No experience necessary! Grants are a great way to connect the exciting work of the foundation with additional resources to do even more for families affected by PMD. We need help searching for appropriate grants and saving them into an organized spreadsheet with deadlines and grant details.
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The Harter Cup is played in support of the PMD Foundation and named in the memory of Jack, Dick (Jack’s grandfather), and John (Jack’s great uncle) Harter.
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Leonardo Xavier Labrada was born on February 8, 2013. He is the youngest of three siblings. He has an older sister (Samantha) and an older brother (Carlitos). From the moment we laid eyes on him, we were in love.
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We are the Hibbets family: I am Aleecia Hibbets and my wonderful husband is David. We have two PMD sons, Joshua (8/26/02) and Evan (12/10/10). I have a family history of (undiagnosed) PMD, and after Joshua was diagnosed, my sister and first cousin were able to be tested and found out that they also carry the same genetic mutation.
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