National Charcot-Marie-Tooth Awareness Week Aims to Draw Attention to Little-Known, but Widespread Disease

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A week dedicated to one of the most commonly inherited peripheral neuropathies in the world - Charcot-Marie-Tooth disorder (CMT) - has been planned for September 19-25, 2010 as proclaimed by the Charcot-Marie-Tooth Association. Together with a group of dedicated parents, patients, family members and friends, along with doctors, nurses and health care workers, the CMTA is hoping an annual event will help raise awareness and increase knowledge about one of the most commonly inherited, but little known, disorders in the United States.

A week dedicated to one of the most commonly inherited peripheral neuropathies in the world - Charcot-Marie-Tooth disorder (CMT) - has been planned for September 19-25, 2010 as proclaimed by the Charcot-Marie-Tooth Association.

Together with a group of dedicated parents, patients, family members and friends, along with doctors, nurses and health care workers, the CMTA is hoping an annual event will help raise awareness and increase knowledge about one of the most commonly inherited, but little known, disorders in the United States.

Elizabeth Ouellette of California, whose son is diagnosed with CMT, was one of the leading advocates for an annual awareness day to reduce misdiagnosis, and increase funding to support CMT related treatments and a cure. "Now is the perfect time to bring families, health professionals, and local organizations together, and to draw attention to the needs of the CMT community," said Ouellette. "For parents and families of kids and adults with CMT, this week is about hope."

An estimated one in every 2,500 people - 2.6 million worldwide - have CMT. It is a progressive disorder that causes the nerve cells leading to the body's extremities to slowly degenerate resulting in the loss of normal use of the hands/arms and legs/feet. It may also lead to a loss of sensory functions and deformities. CMT strikes all ages, genders, races and ethnicities yet sometimes is overlooked and not routinely diagnosed in patients.

"An untold number of children and adults are diagnosed with CMT every day," said David Hall the CEO of the CMTA, which sponsors the national awareness day. "The medical advancements that have been made in recent years through the CMTA's Strategy to Accelerate Researchâ„¢ (STAR) are astounding, and better treatments and a cure are within reach."

The CMTA was launched in 1983 as a national non-profit organization that provides reliable information, support services and resources to families of children with CMT, adults with CMT, and the professionals who work with them. Scientific and technological advances have enabled the CMTA to implement the STAR initiative which is designed to lead to new treatments for CMT within three to five years and possibly a cure within ten years.

To date, more than 40 specific genes known to cause the disorder have been identified. The genetic mutations can now be replicated in the laboratory models and grown as tissue cultures. Spearheaded by an international collaboration of researchers, the STAR initiative will initially involve three projects and focus on the most common form of CMT, type 1A.

Local coordinators nationwide are planning activities in recognition of CMT Awareness Week 2010. For more information on what's happening visit http://www.cmtausa.org or call 1-800-606-2682.

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