Matt just turned 22 this week and in a few days he is about to set out on a 1500 mile bicycle ride spanning the east and west coasts. The first leg takes him from New York to Massachusetts, the second from San Francisco to Boulder, Colorado.
That alone is pretty impressive. But there’s something else you should know about Matt to understand just how extraordinary he is. He has Huntington’s, a disease that claimed the life of his father and grand father.
Huntington’s is a particularly unpleasant genetic brain disorder that affects muscle coordination. Over time nerve cells in a particular part of the brain waste away or break down, leading to problems in moving and thinking. There are no treatments, no cures. It is a terminal illness that leaves Matt with no more than ten to fifteen years to live.
And Matt is determined to live those as completely as he can.
I recently met Matt when he visited the lab of Dr. Jan Nolta at the UC Davis Institute for Regenerative Cures. Dr. Nolta is trying to see if stem cell therapies can help ease or treat the symptoms of Huntington’s. The stem cell agency has been a big supporter of Dr. Nolta’s work, as are Matt and his family. They are doing what they can to help promote it, and to raise public awareness about Huntington’s disease.
One of those ways is through a documentary film that is being made of Matt and his ride. A film crew is going to accompany Matt and his uncle Adam, recording their journey together. Ultimately they hope to show the documentary at a major film festival and any money they make will be used to help pay for care for people with the disease, and to fund research for a cure.
We wish Matt and his uncle all the best as they set out on their journey. If you want to find out more about their journey, and follow them along the way you can do so at http://www.aridewithmatt.com .
You can read more about CIRM support of Huntington's disease research here.
K.M.
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