Extra Special News Sept. 21, 2003!!!!!!

[Guest guest]

(read entire post for all 'the news')

Happy Birthday to all at , today, September 21, 2003! First a bit

of history - WHY started and where we've come from. Then, as is

customary, there is a birthday gift for all. Also no Celebration is any

fun without kids and since we are right in the midst of CMT Awareness

Month, the debut of a very special new web page AND the debut of a new

CMT book!

On September 21, 1999, I started for three reasons: 1) I found a

lack of 'experiential' sharing among CMT users on two former lists 2) I

found a lack of upbeat and positive thought among CMT persons, and 3) I

felt current world research could be disseminated faster to CMT persons

via email. The " if you build it, they will come " school of ideas was

knocking at my door.

I chose egroups (still onelist.com at that time) to be the vehicle I

would use to connect these three 'niches' and hopefully bring many CMT

persons together throughout the globe via email discussions.

I set up the group model and invited a few CMT friends. Word spread far

and wide. I linked to several neurology sites and told

neurologists at major research centers. Today we are beginning our 5th

year of service with membership of 823 spanning 27 countries. On this

date last year our membership was 638 from 24 countries. Our global

village continues to grow.

We have hundreds of links for CMT and other helpful information; we have

23,851 archived messages on a plethora of CMT topics; we have had 43

polls on different aspects of life with CMT (not counting the current

one).

As mentioned earlier, we were onelist first. We then became

egroups after that merger. Then purchased egroups and

here we are at .

As you know, currently our main page is at

http://www./group/.

has evolved to stand for Charcot Marie Tooth Universal Services,

with our upbeat slogan of 'CMT' - CAN MANAGE THIS !!!

Through our discussions, I have learned a great deal about the nature of

CMT and have made some wonderful, trusted friends.

Some of us found that more needed to be done in regards to CMT Awareness

among the general public before any serious fundraising could be done.

In May 2000, the Foundation was created, its sole purpose to

increase CMT Awareness Among the public and further into the general

medical field, realizing very few professionals know about CMT. We

instituted a violet " for CMT Awareness " lapel ribbon, we offer a

Fact Sheet for medical professionals and the general public, we have had

press coverage in both print and television media. Both the " Ed " series

and " JAG " series will have a CMT story worked into their plots and as

you know, a movie on " the CMT Story " will air on Lifetime. I do not have

air dates at this time.

All that we do and offer is free of charge.

The work of is all about service. Our members, our endorsements,

our friends - ALL keep us striving. Striving to connect, communicate,

and create discussions of 'experiential' sharing of CMT disease and

bring greater awareness of our disease to the non-CMT world. Our

Foundation continues " building " , through upbeat, positive,

experiential sharing among members, the exchange of resources for

learning about CMT, through quick dissemination of world research by

email, and by awareness efforts in the non-CMT community.

A further attempt on CMT Child Awareness has been created during this

2003 Awareness Month, offering a simple primer on the CMT child for use

with schools, scouts, babysitters, and all others who interact with

children. This GIFT will be developed even further, as I recommit to

making the world easier for CMT children's needs to be known.

Also in this new site, I have highlighted a very special book about the

CMT child. Titled " Aunt Scarlett's Farm " , it is similar to Charlotte's

Web in style and was written by Wheeler, BSW, and Editor of CMT

Today Magazine. The book is suitable for ages 9 - 12 and will soon be

released. graciouslyallowed one of the drawings to be put on this

CMT Child webpage, as well as a brief exerpt.

THE GIFT is HERE http://www.geocities.com/cmtchildinfo/CMTchild.html

And to help with spreading CMT Awareness, this coming Holiday Season our

friends at Disneyland and Disney Studios are planning " CMT DISEASE

AWARENESS DAYS " ! But more about this later in the year.

So, once again, may I extend 5th birthday wishes and to all of you

who share your lives so graciously. And, keep coming back! There is so

much more to come!

Sincerely your Founder and Moderator,

Gretchen Glick