2700 Chestnut Street
Chester, PA 19013-4867
610-499-9264 * Fax 1-800-606-CMTA
firstname.lastname@example.org * http://www.cmtasa.org
Honorable Governor Cuomo,
I am writing on behalf of the Charcot-Marie-Tooth Association to inform you of our plans for National Charcot-Marie-Tooth Neuromuscular Disease Awareness Month, September 2011.
This month has been set aside to focus on increasing education of this public health issue that affects approximately 150,000 Americans. There are an estimated 7,800 New Yorkers who are afflicted with Charcot-Marie-Tooth disease (CMT). However, many thousands more may be misdiagnosed and/or are unaware of the nature of this degenerative neuromuscular disorder causing grave disability. Plans for “CMT Awareness Month” came about because of the many cases of misdiagnosis and lack of awareness of CMT.
CMT causes deterioration of the peripheral nerves, muscle atrophy, weakness and numbness to legs, forearms hands and feet. CMT causes foot drop, balance problems, hammer toes, high arches, muscle cramping, and loss of reflexes, bone abnormalities, and curvature of the spine. If one parent has CMT there is a 50% chance of passing it on to the children. CMT can be diagnosed with a genetic blood test, or muscle or nerve biopsy. There is no cure or treatment for CMT.
During CMT Awareness Month, we hope to bring national attention to Charcot-Marie-Tooth disease with special events and media involvement. The general public must be made aware of signs and symptoms of CMT and encouraged to seek medical help before foot deformities and nerve damage occur. A proclamation for Charcot-Marie-Tooth disease Awareness Month from your office would be most welcome to help bring attention to this devastating disorder.
Respectfully,The CMTA Vision: A World Without CMT
Our Mission: To generate the resources to find a cure, to create awareness and to improve the quality of life for those affected by Charcot-Marie-Tooth disease . Charcot-Marie-Tooth disease is the most commonly inherited peripheral neuropathy