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.
Read MoreThe 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…
Read MoreDr. 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…
Read MoreOn 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.
Read MoreWhen 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.
Read MoreThe 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.
Read MoreThe 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.
Read MoreI’m nearing my first anniversary as being the PMD Foundation’s Executive Director and I can tell you I love my job, it is my dream job. I won’t say that the job doesn’t have its struggles but we have an amazing board of directors that help support me in my role.
Read MoreAn inspirational speech by a young man, Cisco Oller, who battles Pelizaeus-Merzbacher Disease and is bringing down barriers with love, perseverance, and faith.
Read MoreYou make my life hard, really hard, and that is an understatement. But the one who you really make suffer the most is my innocent son, Nathan. He deserves a full life experience, but no, PMD, you robbed him of that. I really do hate you, and all of the pain you have caused me, my son and the rest of my family. The struggle has been real.
Read MorePMD is not a progressive, demyelinating disease. Human PMD studies can provide researchers with a longer timeframe to study specific patients. PMD research can potentially shorten the timeline towards a cure for all diseases of myelin, including Multiple Sclerosis.
Read MoreI held you in my arms a few minutes ago. I was contemplating the future and it is overwhelming. So I choose to exist here in this moment, and avoid visions of the impending scoliosis that your diagnosis, Pelizaeus-Merzbacher disease, dictates.
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