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Run for Ethan and Nemaline Myopathy
October 9, 2016 @ 10:15 am - 12:00 pm
Ethan is 2 years old and has a rare muscle disease called Nemaline Myopathy. He is a bright, goofy and sweet little boy who works hard every single day.
NM affects all of his muscles to the point where he needs support for breathing, eating (via feeding tube) and movement. He relies on a long list of medical equipment and large health care team to support him in his life. Ethan loves getting out in his wheelchair stroller so we are doing this walk to raise funds for a cure and also to give him the experience of participating in something he at this point cannot do on his own… walk.
We hope with your donations we can find a life-saving cure or treatment to this devastating disease. Thank you so much for donating to a cause near and dear to our hearts! This is our first of hopefully many walks dedicated to finding a cure for NM.