When most people run, there is an expectation that sweating will occur. What if when running, a risk of overheating occurred rather than sweating? This is a reality for some children, including Tyler and Grant Huxman. Tyler and Grant both have EEC Syndrome (Ectrodactyly, Ectodermal Dysplasias Clefting Syndrome), which is very rare. EEC is one of over 150 different types of ectodermal dysplasias which affect about 1 in 10,000 births and are inherited disorders that involve defects in the hair, nails, sweat glands, tear ducts and teeth.
The purpose of the Huxman Run to Sweat event is to raise awareness as well as funds for the National Foundation for Ectodermal Dysplasias (NFED), a non-profit organization with a mission to empower and connect people touched by ectodermal dysplasias through education, support and research. The foundation also provides financial support, advice, guidance and research into ectodermal dysplasias. All of their funding comes from private donations and grants. They receive no federal funding.
The NFED is valuable to many families dealing with ectodermal dysplasias , including the Huxman family. Helping to raise funds is a way to give back. Please consider helping out in any way you can, either by participating in the run, donating to the cause, or volunteering to help with the event on October 1, 2011.
The Huxman Run to Sweat event will occur October 1, 2011 beginning with the 1 Mile Walk/Run at 7:45 am followed by the 5K/10K at 8:30 am. All events will begin at Moundridge Middle School, 526 East Cole, Moundridge, Kansas and end at Black Kettle East Park, corner of Krehbiel St. and Goering St., Moundridge, Kansas (about 2 blocks from the school). Post race food, drinks, entertainment, and awards will be at Black Kettle East Park.
To learn more about ectodermal dysplasias, log into www.nfed.org
To register go to http://huxmanrun2sweat.com and print out a registration form or email Chris and DeAnn Huxman at firstname.lastname@example.org to request a registration form.
Huxman Run 2 Sweat 1 Mile Route www.usatf.org/routes/view.asp
Huxman Run 2 Sweat 5K Route www.usatf.org/routes/view.asp
Huxman Run 2 Sweat 10K Route www.usatf.org/routes/view.asp
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