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Shedding light on 'the biggest disease no one has ever heard of'

Allison Moore, founder of the Hereditary Neuropathy Foundation (HNF), has made it her life's mission to educate people about a neurological condition known as CMT after experiencing sudden-onset CMT in 1997. The disease was triggered from a chemotherapy drug in her cancer treatment. A new federal grant issued by the Centers for Disease Control and Prevention will now enable Moore and her HNF associates to push the boundaries on awareness and research surrounding CMT through several initiatives.

CMT is a progressive disease that deteriorates the nerves in the hands, feet, legs, and arms. Patients may develop muscle deformities that impair movement and can necessitate the use of everything from leg braces to wheelchairs. Until now there has been little discussion of CMT and doctors have been lax in diagnosing the disease early -- particularly because they have been in the dark.

"Many people don't know how to deal with CMT because they know nothing about it," says Moore.

The new grant has paved the way for the creation of The National CMT Resource Center (Help4CMT.com) among other programs. This comprehensive online resource fills the gap in CMT advocacy and information dispersement by being the first forum to connect individuals, doctors, researchers, and the general public in a unique way. The site offers a selection of resources, information and educational/training materials on Charcot-Marie-Tooth Disease and the latest options for symptom management. It can also serve as a way for those with the condition to connect to offer support and encouragement, or be put in touch with those who may offer assistance.

From "Living With CMT" to a page for kids, The National CMT Resource Center targets often underserved groups in disseminating information about a relatively unknown disease outside of its base of people affected. Although estimates say that around 2.6 million people worldwide have CMT and that it is the most common inherited neuropathy, knowledge of CMT on a global, even national, scale is limited.

Despite its similarity to the better-known multiple sclerosis, CMT has yet to have the same level of media chatter as some other more widely recognized causes. Apart from actress Julie Newmar (the original Catwoman) there have been few high-profile people to become the faces of the disease -- something that tends to "wake up" the public. Thanks to the CDC grant, The National CMT Resource Center is set to change all that -- spreading the word across the globe. The added bonus is that all of these resources are provided for free.

Another offering made possible by the grant is the CMT and Disability School Outreach Program. This enables educators and children to learn about CMT and be mindful of individuals with the disease or other disabilities. Youth-geared information teach lessons on empathy. Plus the book, "Arlene on the Scene" serves to open the lines of communication about CMT or disability as part of inclusion education.

"Through our School Outreach Program we offer educational materials and a live author presentation aimed at increasing understanding of disability in a fun, interactive way," says Carol Liu, a member of HNF. "Our classrooms today are filled with a wide variety of strengths and needs, abilities and challenges. This calls for an increased understanding of disability and difference on the part of students."

The grant is likely to open even more doors to help catapult CMT awareness all around the globe. More information can be found at Help4CMT.