A Nasty Disease and a Spunky Kid

MEMORANDUM

TO: Editors and Reporters

FROM: Marjorie Centofanti

DATE: March 8, 2001

SUBJECT: A Nasty Disease and a Spunky Kid:

Donation from 14-year-old Cody Unser -- of Racing Family Fame -- Sparks National Network of Transverse Myelitis Centers

A Johns Hopkins neurologist, inspired by the plight of a young patient, has established a nationwide consortium of Centers of Excellence for research and treatment of the often-paralytic neurological disease transverse myelitis (TM).

When Cody Unser visited Hopkins' Transverse Myelitis Center two years ago, following a sudden onset of complete lower-body paralysis, she formed a fast friendship with clinician/researcher Douglas Kerr, who directs the center. Unser, daughter of champion racer Al Unser Jr., determined to advance research on the poorly understood disease. With a $60,000 check from NASCAR Winston Cup champion Bobby Labonte, the young woman founded The Cody Unser First Step Foundation, now a lightning rod for TM research donations.

Hopkins has been the country's sole center for the disease, but, says Kerr, finding a therapy would progress more quickly with a formal organization of neurologists and patients worldwide. Spurred on by Unser and the First Step Foundation's $20,000 donation, Kerr has organized an international consortium of research hospitals.

The new centers, so far, include Washington University at St. Louis, the Mayo Clinic in Rochester, Minn., Ohio's Cleveland Clinic, Yale University, the University of Washington (Seattle), the Miami Project to Cure Paralysis, in Fla., the University of New Mexico and the Barrow Neurological Institute in Phoenix. One in the Netherlands will soon join on.

Each center will collect data on patients' tissues, disease history and treatment, as well as epidemiological information, to pool in an international database. A yearly symposium -- the first one this July in Baltimore -- will help members share findings.

Transverse myelitis is an inflammation of the spinal cord that causes damage and ongoing disease. While rare, TM can be triggered by common ailments like chicken pox or the flu, by auto-immune reactions to vaccinations or other as-yet unknown causes.

For more information, call Marjorie Centofanti at 410-955-8725 or e-mail: [email protected]

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