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Charcot-Marie-Tooth disease non-profit Organization launches new on-line registration system.

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Posted on 04-14-2006 00:00

Summary:
New York-based Hereditary Neuropathy Foundation Inc. has launched today a new on-line member registration system, which also supports on-line donations and booklet sales. The new custom, multi-feature system was designed and developed by COMMbits.

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Full Story:

Charcot-Marie-Tooth DiseaseCharcot-Marie-Tooth disease (also known as CMT) is an inherited neurolomuscular syndrome, discovered by three European doctors, Jean Charcot, Pierre Marie and Howard Tooth in the late eighteen hundreds. Their surnames are represented in the disease name, and this often misleads and confuses the general public because it does not reflect or explain the nature of the disease itself. Charcot-Marie-Tooth is considered to be the most commonly inherited form of peripheral neuropathy affecting approximately one in 2,500 adults.

Charcot-Marie-Tooth (CMT) is diagnosed by clinical features of muscle atrophy, age of onset, electromyography (EMG), nerve biopsy and through genetic testing.

Charcot-Marie-Tooth disease (CMT) is a hereditary motor-sensory neuropathy (HMSN). HMSNs are a group of progressive neurological disorders that affect the motor and sensory units of the peripheral nervous system. CMT causes weakness because the nerve signals are impaired (demyelinated) before they reach the muscle. Over time this causes atrophy (a loss of muscle strength) in various areas of the body such as the feet, legs, hands, and diaphragm.

One of the most prominent Organizations supporting people with Charcot-Marie-Tooth around the world and their families is Hereditary Neuropathy Foundation (HNF) of New York. True to its commitment for supporting non-profit Organizations, in addition to the interest and deep involvement of its Founder Al Poullis in building, better understanding, and enhancing on-line social networks, COMMbits has been involved with Charcot-Marie-Tooth and the specific network since 2003. Other initiatives throughout this 3-year period included an e-broadcasting strategy, a co-Marketing Program, an advertising Program, and an on-line forum for people with Charcot-Marie-Tooth, just to name a few. Today's launch of the new on-line registration system is a huge step forward in the non-profit Organization's initiatives to financially sustain itself. The Organization's target is to increase awareness about the disease, which will ultimately lead the way to funding its own research in search for a cure.

The new registration system allows people with Charcot-Marie-Tooth disease and the general public to subscribe securely on-line and gain immediate access to the Organization's on-line library of 200+ articles on a variety of issues related to Charcot-Marie-Tooth. In addition, the new system allows existing members to easily renew their subscriptions, as well as anyone to purchase the Organization's own booklet "A Guide to Hereditary Neuropathies" in addition to submitting donations on-line.

PLEASE DONATE, IF YOU CAN
We encourage everyone to support the work of any non-profit Organizations. People with Charcot-Marie-Tooth need your support too. Donations have a profound effect in financially supporting the work of the Hereditary Neuropathy Foundaction as it strives to discover and deliver services that will make patients' lives more functional and self-manageable.
To donate now, please click here.


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