Leukodystrophy Conference Impressions

A letter from Paul Erena on his attendance at the international Leukodystrophy conference: 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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Volunteers Needed!

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...
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2nd Annual Harter Cup

Doug began attending the PMD NJ golf outing over 10 years ago and became hooked on the event given the ability to spend the day with others in the PMD community and share this experience with friends and family. The event became an annual tradition for the Harters and one of their favorite days of...
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Meet Your PMD Warrior

If we were asked to describe an affected PMD boy or girl, what word comes to mind?  There are actually too many, right?  I do think “warrior” fits pretty well.  If you do a google search, here is the definition it shares: war·ri·or (noun) ˈwôrēər/ 1. (especially in former times) a brave or experienced soldier...
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Welcome to Holland

Like most of you, PMD was something that just showed up in our family, out of nowhere.  It’s very similar to the poem, “Welcome to Holland.”  http://www.our-kids.org/Archives/Holland.html   When first diagnosed, we were told that Logan wouldn’t live past his 10th birthday.  He was two at the time and I honestly wasn’t sure how to fill a...
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Rolling Through Life

An inspirational speech by a young man, Cisco Oller, who battles Pelizaeus-Merzbacher Disease and is bringing down barriers with love, perseverance, and faith. His PMD is less severe than most and this allows him to articulate clearly what many boys trapped in their bodies cannot. Cisco reminds us to be thankful for all that we...
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