Posts in Blog
The Biggest Moment in The PMD Foundation’s History

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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Leukodystrophy Conference Impressions

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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BlogJared Gold
Don't Take Your Lamborghini to Just Anyone!

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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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 deadlines and grant details.

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