Rare Disease Day

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"A Couple Participating in The Boston Marathon is Helping to Raise Awareness for Gne-Myopathy"

A couple (Mike and Christine) runners who will be participating in the Boston Marathon has graciously "adopted" me as partner/patient. One of my goals is to globally bring an understanding, and increase the awareness of Gne-Myopathy. We are very fortunate, in addition to recent attention given to our disease, and now two runners will represent us in the Boston Marathon. This event is coordinated with the National Organization for Rare Disorders.

For more read http://www.columbian.com/news/2015/apr/17/locals-make-motivated-return-to-boston-marathon