Published October 2004

MDA: providing hope, support

By John Wolcott
SCBJ Editor

The “Jerry Lewis Telethon” on Sept. 5 and 6 was America’s annual reminder of the Muscular Dystrophy Association’s battle against this debilitating disease, a television event that raised $59.4 million.

But too little attention is paid during the months in between telethons to the everyday efforts of the hundreds of MDA chapters across the United States, including in Snohomish County.

“Our research provides hope for muscular dystrophy patients, but our other goal is to provide help. Our Everett office serves more than 2,000 patients in Snohomish, Skagit, Island, Whatcom and San Juan counties with their daily needs,” said the chapter’s field representative, Brianna Clark.

“Many people don’t realize that muscular dystrophy actually includes 43 different neuromuscular diseases that affect muscles throughout the body, from children of 2 or 3 to adults with ALS, Lou Gehrig’s disease, which is fatal within one to five years,” she said.

The MDA is much more than a support group or a medical research organization, although it involves those activities, too, she said.

“A lot of people with muscular dystrophy don’t know they can get help from us to improve the vitality of their lives. We provide access to a medical clinic with an MD specialist, a physical therapist, occupational therapist and even translators if they’re needed,” Clark said.

Photo courtesy of the Muscular Dystrophy Association Since 1955, the Muscular Dystrophy Association has made its national summer camps into magical kingdoms for neuromuscular disease patients, a world where there are no barriers and even children with disabilities are able to “just be a kid” for a week, as well as learn skills they can use year-around.

Social workers are available, too, she said, to help patients find resources and figure out paperwork that can be very difficult to deal with, anything to make things easier for them.

“It’s difficult enough to deal with MD, but facing things like knowing you’re losing the ability to work is a scary experience. We work to guide them through those times and support them for what’s coming,” she said.

There are three full-time and one part-time staffers at the Everett office, but hundreds of volunteers help make the MDA’s program possible and handle 70 percent of the fund raising the group needs to stay open. Shelby Hintze, 12, of Marysville has been chosen as the group’s spokesperson this year for telling people about the disease and the good work the MDA does for those in need.

The MDA office relies on independent fund-raising efforts primarily but also has some dedicated support groups that raise funds, including Haggen food stores, Albertson’s and Harley Davidson HOG groups.

No doubt one of the most devoted support groups, however, is the International Association of Fire Fighters, which is celebrating its 50th year as the largest single support group for muscular dystrophy.

In late July, Everett firefighters spent hours at high-traffic intersections asking motorists to fill up their large fire-fighting boots with dollars to fight muscular dystrophy.

The local MDA office also sponsors summer camps for MD patients, providing outdoor group experiences with one-on-one assistance that helps patients overcome physical barriers to enjoy events they normally would not be able to do alone, including swimming, boating, baseball and horseback riding. Special camp guests include local fire fighters and Harley groups.

Everett’s MDA office is also involved in an extensive education program about MD, providing teachers with written materials and videos for classrooms, as well as information for students to take home to their parents.

“The kids also have hopping contests and earn donations with pledges. It’s neat to see kids embrace that and learn that someone with leg braces or a wheelchair may look different but inside they’re just people like everyone else,” Clark said.

Along with daily help for patients, the MDA provides long-term research. Much of what it has discovered about muscles has been the basis for school textbooks for years on biology and anatomy, Clark said.

“In the last year, one exciting development came from the University of Washington’s research, funded by our chapter and King County’s chapter, that showed injections of cystrofin at cellular levels can stimulate cells to rebuild and grow. Now they’re working to find ways to inject that into a body systemically to see if it will leak into the bloodstream with another medication,” Clark said.

For more information about the Muscular Dystrophy Association, visit www.mdausa.org. To volunteer or request services locally, contact the Everett chapter at 3201 Broadway or call 425-259-4078.

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