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 CMTUS (http://cmtushope.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 CMTUS, 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subscribed to a Canadian newsletter but the information always seemed outdated,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.”
CMTUS member Jennifer 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, CMTUS 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, CMTUS 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 CMTUS community helps ease
the feelings of depression and isolation and brings individuals into a
supportive system they might not have otherwise.”
CMTUS 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://cmtushope.info or email gfijig@yahoo.com.