NEWS RELEASE EXAMPLE

CONTACT: [Name][City that you represent] Support Group Leader[phone number][email]

FOR IMMEDIATE RELEASE

FIRST ANNUAL CHARCOT-MARIE-TOOTH (CMT) AWARENESS WEEK KICKS OFF SEPTEMBER 19

Local Resident Spearheads Outreach Efforts for [insert City] Area CMT Patients

[Insert City and State], September X -- 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 (CMTA).

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.

Sponsored by the CMTA, the [Insert SAG chapter] is being spearheaded by local resident, [Insert Name(s)] who has CMT. [Insert information about what your group is doing – i.e. fundraisers, special events, etc.]

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 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 Research™ (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 www.cmtausa.org or call 1-800-606-2682. For information on the [Insert local group name and contact info..]

About the Charcot-Marie-Tooth Association (CMTA):The CMTA, headquartered in Chester, Pennsylvania, is a 501©(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 an Executive Director 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 www.cmtausa.org.

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