It's Volunteer Week and Here's Our First Highlight: Charlene York


Char has been a mainstay of Cure CMD almost since inception. Mom, wife, sister-in-law and daughter-in-law to four (and counting) CMD-affected family members, Char has dedicated her (early) retirement to our cause.

The number of projects over the past 10 years that Char has been instrumental in completing cannot be fully catalogued, but here are some highlights:

  • A constant and insistent voice for CMD at state and federal rare disease events

  • Management of the CMD Scientific Publication Library

  • Management of the CMD Researcher Database

  • Travel & hotel for over 150 and hotel contract negotiation for 2017 CMD SciFam

  • Travel & hotel for more than 80 attendees to our four 2016-2017 CMD Scientific Meetings

  • Travel & hotel (more than 140 trips!) for CMD Hyperinsuflation Study

  • Worked to get several subtypes of CMD/CM on the U.S. Disability Compassionate Allowance List

  • Worked to created a new nomenclature system to define CMD subypes by protein invovled

We know there are dozens of you out there who have interacted with Char in one way or another over the years. Char continues to be our go-to person for new projects and is always asking for more. Thanks for her countless hours of dedication should also go to her loving husband, George, who graciously shares her with us.

Char, we could never thank you enough for all your work, and we most certainly wouldn't be where we are today without you!

Here's a photo from SciFam of Char and a conference attendee doing what she does - making everyone feel like part of the family.


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