Here's the newspaper story!

[Guest guest]

VALLEY PEOPLE

By Leanne -Elliott

(Link has photo)

http://www.santaynezvalleyjournal.com/archive/5/25/568/ this in the

online paper, the print edition come out tomomorrow, I think the

title is " From Art to Advocate " .

(this paper has a readership of about 450,000 people, not counting

the University - note to all - it was really hard to get this

reporter up to speed on terminology, and disability awareness, but

she did her best and there are only so many column inches she has to

work with. The " Best News " is that I got a couple of contacts at

major papers, so I'm not stopping here - G)

Gretchen Glick barely passed biology in high school. She laughs

about how ironic it is as she sits in front of her computer holding

a two-inch thick, wire-bound book of research abstracts from

clinical studies on a little-known neurological disease called

Charcot-Marie-Tooth syndrome (CMT).

Often misdiagnosed as Muscular Dystrophy (MD), Lyme disease or

multiple sclerosis (MS), CMT is the most common inherited

neuromuscular disorder, globally affecting over six million people

of all ages.

While on a family vacation to the east coast in the '60s, Glick's

mother noticed the first signs of CMT and, shortly after, back home

in Los Angeles, Glick was diagnosed with a disease about which not

very much was known. Neurology was in its infancy, and ideas, let

alone treatments about CMT, were merely basic, text book hypotheses.

The outgoing, high-spirited 10-year-old was suddenly bed-ridden

after foot tendon surgery on both feet and subsequently a target for

painful, experimental therapies. Although much of her adolescent

years were riddled with what she calls " wicked tests, " Glick was

pleased that part of her therapy also included doing some of her

favorite things—horse back riding, swimming and walking on the beach

to prevent atrophy in her weakened legs and feet.

It turns out, with early detection and consistent physical therapy,

CMT didn't do much to slow down the sharp-minded, energetic Glick.

She went to college at California Lutheran University in Thousand

Oaks and earned her master's degree in Art History from Arizona

State University. Her professional resume is as diverse as they

come, including the primary coordinator for myriad high-profile

events, eco-travel agent, writer, poet, artist, animal-advocate,

public speaker, development consultant, public information director,

exhibit design consultant, parish council member and most recently,

a source of hope and a wellspring of information for those suffering

from CMT.

In 1999, Glick founded (http://hope.info), an online,

global network of individuals suffering the pain, fatigue, lack of

balance, tremors, nerve burning and the sometimes other crippling

affects of CMT.

" Before , I subscribed to a Canadian newsletter but the

information always seemed outdated, and one Web site was simply a

forum for whining, " Glick said.

Finally, a friend in Nebraska encouraged her to start a new group

that offered positive, current and relative information sharing.

With the help of the rapidly developing Internet, Glick succeeded in

short order and over the last nine years has become a layman

researcher of the disease, writing countless articles with titles

such as " DNA Taxi, anyone? " " Arresting CMT with Gene Therapy, " and

inspirational articles such as, " These Boots Were Made for Hiking. "

member Robedeaux from Landcaster, Calif., has known

Glick for nine years and was the first person to join the forum.

" Gretchen is amazing. Everyday I think, what would we do without

her? " Robedeuax said, of Gretchen, who she now considers a close

friend. " It can be so easy to get down on life, but Gretchen is

always saying `let's look at the positive!' There's no way I could

actually repay her for all she's done. "

Today, on the eve of its ninth anniversary, has 1,860 members

spanning 34 countries, and growing by nearly 100 new members every

year. Part of the forum's success is Glick's hard and fast rules: no

politics, no religion and always try to keep it positive. This

combined with daily Google updates, information mined from the

National Library of Medicine, and Glick's constant surveying of

current clinical research, offers real support, real feedback

and real help for its members.

" It brings people out of seclusion, " Glick said. " Although this

disease doesn't affect the intellectual capacity of the brain, it

can have a profound psychological influence. The community

helps ease the feelings of depression and isolation and brings

individuals into a supportive system they might not have otherwise. "

Web site moderator, Rick Elder, became involved in the network

when only a few members were exchanging information. Elder's

daughter suffers from the disease, which prompted him to jump right

in to the discussions and developing the Website.

" When I first got involved there were maybe a few hundred messages

in the archives, now there's over 50,000 archived messages and

hundreds of members, and I've read every one of the entries. I've

learned so much. "

Gretchen makes a big effort to always have the most current research

posted on the site, something many forum moderators don't take the

time to do, Elder said.

" It gives us real hope and real information, " he added.

Next year, Glick plans to bring members closer to home. She is

currently organizing a two-day seminar next June in Solvang,

featuring world-class, guest speakers and leading experts in their

field of research who will be bringing ground-breaking information

to the mysteries of CMT. Attendees will learn about aquatic exercise

benefits for the neuromuscular disease, and have some fun together.

Glick is extending the invitation to local residents, and she's also

working on getting continuing education credits for the doctors and

medical professionals who attend the conference.

Although fatigue is a common side effect of CMT, Glick doesn't show

any signs of slowing down. Now in her mid-fifties she's still on her

feet without any assistive devices other than orthotics in her shoes

and she keeps a regular aquatics schedule at Performance Fitness in

Solvang.

" People with CMT have to think outside the box, or get rid of it all

together, " Glick said. " It starts in the mind and translates to the

body. "

With a mind that can run circles around most people, Glick is

setting an example of how to fully function with a physical

disability, and how to stay focused on her mission, which is

synonymous with her vision for everyone with CMT,

" Do good work...and stay on your feet. "

For more information on CMT visit http://hope.info or email

gfijig@....

[Guest guest]

What a wonderful write up....thanks you so much for keeping this site going.

Thanks

Geri

[Guest guest]

Wonderful article, Gretchen! Congratulations for getting the word out!

JoAnn N.

Newfoundland, Canada (originally from NJ)

[Guest guest]

Wow, Gretchen! Great article! Great picture, too. ;-) You're really attractive!

And an Art History master's degree? Does it get any better than that?!

[Guest guest]

Great article. You have some very wonderful accomplishments Gretchen.

Barb

[Guest guest]

Hi Gretchen.

What a positive article! I hope this also leads to some leads for funding for

the conference next year.

Best wishes from London, where I should now be more or less for the next 8 weeks

- a record for me in recent years!

Donna

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