West Coast Conference Report

[Guest guest]

CMTA West Coast Conference Attracts Huge Audience

November 26, 2008

The Palo Alto, California patient/family conference was the largest

one ever held by the CMTA, attracting more than 250 attendees. On

Saturday, November 8, 2008, the Park Community Center

welcomed a crowd of people anxious to hear about the latest in CMT

research and treatment. They were not disappointed!

The audience was welcomed by organizer and Board member,

Ouellette. The conference had been her dream and her mission for the

last three months and all her work was rewarded by the fantastic

turnout on Saturday.

The program began with a challenge from Chairman of the Board and

President, Livney, to " imagine a world without CMT. " He

further discussed the three-pronged focus of the organization to fund

research, to promote awareness, and to provide support through our

network of support groups.

He was followed by the Chairman of the CMTA's Medical Advisory Board,

Dr. Shy, who spoke on " Making sense of Alphabet Soup. " His

mission was to explain the various forms of CMT, their gene

locations, and why knowing types could be important to a person. As

research zeroes in on correcting specific flaws, it will be crucial

for people to know their type in order to know what correction might

work for them. Dr. Shy also talked about the Wayne State Clinic, the

STAR initiative, and the new Centers of Excellence. His presentation

was followed by many questions and answers.

The CMTA was delighted to have Newmar, former Catwoman in the

Batman TV series, noted for her fabulous legs, in attendance. She

greeted the crowd and stayed for the entire conference. She has

recently been diagnosed with CMT.

Dr. Billings, President and CEO of CELLectiveDX, explained to

the audience how genetic policy affects people with genetic diseases

and how important government policy can be in providing equity for

all persons facing genetic issues.

After a short break, the audience learned about foot and ankle

options from Dr. Bill Metaxas, a podiatrist who treats some of the

people in attendance. He was followed by Kaubish, a physical

therapist familiar with CMT, who advocated building up unaffected

muscles in order to have them take over some of the work of muscles

directly affected by CMT.

Gretchen Glick, founder of the online group , concluded the

morning's presentations with a brief explanation of what she set out

to do 10 years ago in founding the group. Her postings of research

findings and her chat room discussions have provided CMT patients

with important information for a decade.

After lunch, CMTA Director of Program Services, Pat Dreibelbis,

talked about the development of the CMTA over its 25 years. She

challenged attendees to all buy and wear a " Be a Star " aqua bracelet

for a dollar (like Lance Armstrong's yellow " Live Strong " ones)

before the conference concluded. By the time of the closing remarks,

not one bracelet remained. The challenge had worked perfectly. Dana

Schwertfeger, Director of Member Services, then talked about

the " Circle of Friends " campaigns and announced the awarding of a

scooter to Capps.

Genetic counselors Carly Siskind and a Feely, from Wayne State,

explained inheritance patterns and the value of doing a genetic

history. They even encouraged the audience to do a family tree this

year during the Thanksgiving feast when large family gatherings often

take place. The final presenter was McKale, an orthotist who

also works with the members of the Wayne State Clinic staff. He

brought a bag full of possible orthotic corrections for the CMT foot

and leg and discussed which type works best for which individuals. He

also discouraged people from " jumping " on each new bracing type that

comes out without carefully evaluating the likely function gain the

device might provide. His presentation provoked questions because so

many of the attendees were in braces of one sort or another or were

contemplating the need for braces in the future.

The day concluded with a gathering where attendees could ask personal

questions of the presenters and enjoy desserts provided by the San

Francisco Bay area support group. Throughout the day, attendees were

able to enjoy the displays of vendors such as Active Forever, Diablo

Prosthetics and Orthotics, Healthy Bare Feet, and the Bay Sleep

Clinic. They also could meet and talk with author Jonah Berger, who

wrote He Walks Like a Cowboy.

All of the presentations, vendor displays, and opportunities to speak

with others who have CMT made a full and valuable day for those who

were able to attend. hopes to be able to arrange another

West Coast conference in two or three years.

For those who were unable to attend, the CMTA videotaped the

conference. A DVD is forthcoming. Visit cmtausa.org