September 2018 News

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PMD Leadership Letter - “Don’t take your Lamborghini to just anyone!”

  • “The local doctors that care for our kids are wonderful, but lack the […] experience or tools they need to give the best care possible,” says Dave Manley, President of the PMD Foundation. “Our PMD kids are like Lamborghinis and it is important that we take them to the places that have the knowledge and equipment to properly take care of them.”

    Read more here


2018 Family Conference on H-ABC/TUBB4A-related Leukodystrophy

  • On Oct. 27, CHOP's leukodystrophy center is holding its first-ever conference on the H-ABC form of the disease. The center needs as many H-ABC kids as possible to journey to CHOP, where they'll be evaluated by clinicians who've seen enough children with leukodystrophy to recognize the disease's many nuances.

    Learn more about the event here and follow press coverage here