Some of you may be unaware of a rare genetic disorder known as ectodermal dysplasias. This condition affects about 1 in 10,000 births. The ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands, and teeth. When a person has at least two types of abnormal features from above, the individual is identified as being affected by ectodermal dysplasia. Symptoms range from mild such as a missing tooth and thin hair to severe such as skin erosion or bone anomalies and many individuals affected by ectodermal dysplasias cannot perspire. Their sweat glands may function abnormally or may not have developed at all. Without normal sweat production, the body cannot regulate temperature properly. While this condition is rarely life threatening it is almost always heartbreaking.
We have four boys Ryan (13), Tyler (11), Andrew (5) and Grant (3). Tyler and Grant Huxman are both affected by Ectrodactyly Ectodermal Dysplasia Clefting Syndrome (EEC), which is one of the more than 150 different types of ectodermal dysplasias. They both have bone anomalies consisting of missing fingers and toes. Tyler has endured more than 20 surgeries in his young life, with major dental work being the main ongoing treatment we anticipate in the years to come. Grant has undergone 5 surgeries in his short life, and we anticipate intensive dental work throughout his life also. Both have experienced the most difficulty with their tear ducts as they do not function correctly. Tyler has had a major surgery to recreate his tear ducts which has been helpful, although still not perfect. Grant experiences very goopy and mattery eyes on a daily basis and is missing the puncta (hole for the tear duct) so does not have an adequate drainage system. Neither Tyler nor Grant have fully functional sweat glands so they struggle to control their body temperature, particularly in the heat. Both boys are active, happy, and positive kids that maintain the attitude that “I can do anything another person can do.” Tyler loves athletics and participates in soccer, football, basketball, track, and baseball. Grant loves playing with tractors, trucks, and cars. He also runs around to keep up with his 3 older brothers and basically loves doing anything his brothers do.
The purpose of the WORLDWIDE Huxman Run 2 Sweat Virtual Run event is to raise awareness as well as funds for the National Foundation for Ectodermal Dysplasias (NFED) a 501(c) 3 (Federal tax id. #37-1112496) non -profit organization. NFED’s mission is to empower and connect people touched by ectodermal dyspasias 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.
You can help us help them by participating in our Huxman Run to Sweat benefit event that will take place the month of October everywhere or become a sponsor to help underwrite the event. We are grateful for any donation. Every small amount is a tremendous help. If you have products, services or simply a cash donation anything will help and everything is greatly appreciated.
Thank you very much for your consideration.
Chris and DeAnn Huxman
To learn more about ectodermal dysplasias, visit