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A Couple Participating in the Boston Marathon Will Help us 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 bring an understanding, and increase the awareness of gne-myopathy globally.  We are very fortunate, in addition to recent attention our disease has been given, and now two runners will represent us in the Boston Marathon.   This event is coordinated with the National Organization for Rare Disorders.   Please share their web site, and donate if you can.

http://www.firstgiving.com/fundraiser/Donabedians/2015-running-for-rare-diseases-team

Not only they will run for gne-myopathy, the funds raised will be given to The National Institutes Of Health.

"All the funds raised for NORD through the Running for Rare Diseases Team will support the Genzyme/NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.The new fund will pay for the medical testing for individuals who cannot afford the basic medical work-up needed to make them eligible to apply for the UDP. We are thrilled to be able to provide this patient assistance program to support patients who have exhausted all other avenues to seek a diagnosis!"

Thank you Mike, Christine, and NORD for this wonderful opportunity. Tara

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