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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I’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.
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An inspirational speech by a young man, Cisco Oller, who battles Pelizaeus-Merzbacher Disease and is bringing down barriers with love, perseverance, and faith.
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You 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.
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PMD 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.
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I 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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