Charcot-Marie-Tooth Awareness Month Aims to Draw Attention to Little-Known, But Widespread Disease

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Nationwide and Global Events Scheduled Throughout September 2012

A month dedicated to one of the most commonly inherited peripheral neuropathies in the world – Charcot-Marie-Tooth disorder (CMT) – has been planned throughout September 2012, as proclaimed by the national Charcot-Marie-Tooth Association (CMTA).

Together with a group of committed patients, family members and friends, along with doctors, nurses and health care workers, the CMTA will host local, national and global events to raise awareness and increase knowledge about one of the most commonly inherited, but little known disorders in the United States.

Jeana Sweeney of Johnstown Pennsylvania, a leading facilitator of the CMTA’s second annual CMT Awareness Month, patient and mother to a young CMT patient, is hoping that the event will reduce misdiagnosis and increase funding to support CMT related treatments. “CMT Awareness Month is about activating an audience of supporters to help educate not only those who live with CMT, but also the tens of thousands of people who provide support and care for the CMT community.”

An estimated one in every 2,500 people – 2.6 million worldwide – has 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 structural changes. CMT strikes people of all ages, genders, races and ethnicities, yet sometimes is overlooked and not routinely diagnosed in patients.

Established in 1983, the CMTA is a national non-profit organization, providing 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 Strategy to Accelerate Research™ (STAR) initiative, which is designed to lead to new treatments for CMT within three to five years.

The CMTA has funded more than $2 million in CMT research, and by working with the preeminent thought leaders and institutions within the inherited neuropathy community, the CMTA is at the forefront of the advancement of CMT research, creation of clinical standards of care, and the development of therapies to treat and cure CMT. Through these strategic relationships and programs, the CMTA is not only able to stimulate the advancement of collaborative CMT research and clinical care, but also provides essential information for outreach and education to the national CMT patient and health care professional communities.

The CMTA launched STAR as a strategic research program to maximize breakthroughs in genetics and dramatically speed up the pace of CMT research. The opportunities associated with STAR stem from the fact that the causes of CMT have been pinpointed, leading to the identification of at least 40 specific gene defects. More importantly, the fact that these genetic mutations can be replicated in laboratory models and grown as tissue cultures opens an extraordinary window of opportunity to develop treatments and cures for CMT in the immediate and foreseeable future. The scientists conducting research for the STAR program have been chosen from an international body of the world’s most accomplished medical pioneers. The STAR program’s unique character stems from the willingness of the scientists to come together to advance CMT research as a team, sharing and communicating ideas, discoveries and research findings. This international network of scientists are each working on fundamental biological aspects of this disease – leveraging and promoting this unique expertise in a collaborative manner is what set’s apart the STAR program from any related CMT-research effort.

Local coordinators nationwide are planning activities in recognition of CMT Awareness Month 2012. Support and Action Group Day will take place on September 15th and a Global Day, scheduled for September 28th will unite international organizations to raise awareness for CMT. Facilitators across the country have sent letters to their state legislators about CMT awareness, and dozens of local fundraising and awareness activities have been scheduled throughout September. In addition, throughout Awareness Month, two Extraordinary Persons will be honored, recognizing their capacity to rise above challenges and underscoring their drive to help make the vision of a world without CMT a reality.

For more information on what’s happening, visit http://www.wearethecmta.com, or become a fan of the official “Charcot-Marie-Tooth Association: The Time is Now” Facebook Fan page (http://www.facebook.com/CMTAssociation) or call 1-800-606-2682.

About the Charcot-Marie-Tooth Association (CMTA):
The CMTA, headquartered in Glenolden, Pennsylvania, is a 501(C)(3) nonprofit organization founded in 1983. The goals of the CMTA include providing patient support, public education, promotion of research, and ultimately the improved treatment and cure of CMT. The organization is led by a Chief Executive Officer and governed by a voluntary Board of Directors (BOD), and an international Medical Advisory Board (MAB) comprised of over fifty clinical and research professionals in specialties such as neurology, genetics, orthopedic surgery, physiatry, physical therapy and podiatry. The CMTA Scientific Advisory Board (SAB) is comprised of senior scientists with extensive research experience related to CMT. An External Advisory Board, made up of internationally recognized scientists, serves in an advisory capacity to the SAB. The CMTA has more than 20,000 patients and families, supportive friends, and medical professionals in its member database. For more information, visit http://www.wearethecmta.com

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Jeana Sweeney
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