Press Release CMT Awareness Week

1. 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

2. 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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