CMTA West Coast Conference Attracts Huge Audience

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 Mitchell 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, Elizabeth 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.

CMTA Board Member Elizabeth Ouellette, who organized the West Coast Conference, shares a moment with CMTA Chairman and President Patrick Livney

The program began with a challenge from Chairman of the Board and President, Patrick 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. Michael 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.

CMTA Board Member Steve O'Donnell and actress Julie Newmar attend the West Coast Conference

The CMTA was delighted to have Julie 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. Paul 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 Jennifer 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 CMTUS, 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 David Capps.

Genetic counselors Carly Siskind and Shawna 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 Sean 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. Elizabeth hopes to be able to arrange another West Coast conference in two or three years.

DVD of Conference Is Now Available

For those who were unable to attend, the CMTA videotaped the conference. Please click here if you would like to preview and order the DVD.