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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.  
"On Monday, the Donabedians will be back on the Boston Marathon course, running for a different sort of healing. This time, they are running as part of the Running for Rare Diseases Marathon Team for the National Organization for Rare Disorders.
"This was an opportunity to get involved with something that really needs people stepping up and getting involved to help raise awareness," Mike said.
It was at the midpoint of the 2014 Boston Marathon that Mike noticed a group of supporters with signs encouraging members of the rare diseases team. So this time Christine and Mike are running for patient partner — Tara Voogel of California, who suffers from GNE Myopathy also known as Hereditary Inclusion Body Myopathy (HIBM). HIBM progressively weakens patients, and often strikes in the prime of life.
Christine said she talks with Voogel at least once each week, getting updates on Voogel's efforts to raise awareness and money for research and treatment for people with HIBM.
"She really provides an inspiration to me," Christine said."

Here is a link of  from The Columbian Newspaper on the Mike and Christine and their effort to help increase the awareness of Gne-Myopathy.
http://www.columbian.com/news/2015/apr/17/locals-make-motivated-return-to-boston-marathon/ 

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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