She sets high goal to fight rare illness

Campaign: Arbutus woman joins team climbing Mount Kilimanjaro to raise awareness of myositis.

July 17, 2002|By Tricia Bishop | Tricia Bishop,SUN STAFF

For Dagmar Slaven, there's little difference between Africa's tallest peak and a set of stairs without a banister: Both are equally impossible for her to climb.

"My upper legs are so weak," she explained from her home in Weymouth, Mass. "I cannot handle any kind of steps unless there's a railing I can pull myself up with."

She can't walk on the beach. She can't easily get out of a chair. She can't swallow reliably, and now she is starting to lose control of the fingers in her left hand.

"It's a sob story all around," she said.

Slaven, 61, has a form of myositis, a little-known degenerative muscular disease that affects at least 30,000 Americans, progressively robbing them of their strength and mobility. It can affect anyone anytime, and there is no cure.

In four days, an international team of eight climbers, including one woman from Maryland, will begin a six-day ascent of Mount Kilimanjaro's 19,340 feet to raise awareness and funds to fight the illness.

They have had to pay their own way (about $3,500 each) and raise as much money as they could on their own. So far, they've raised $70,000.

"This is more challenging than anything I've ever thought about doing," said Tara Neavins, (who lives in Arbutus and runs a men's anger management program at the Domestic Violence Center of Howard County.

To get money together, Neavins launched a letter-writing campaign, sought contributions from businesses and took donations from staff members at her mother's restaurants, who paid so they would not have to wear uniforms for certain shifts.

Neavins, a psychology doctoral student at the University of Maryland, Baltimore County, is a veteran athletic fund-raiser.

She has participated in a 60-mile walk to benefit breast cancer research and has taken part in runs for various causes, including arthritis and multiple sclerosis. So, she balked only a little when she heard about the climb last spring from her friend Laurel Colton, organizer of the fund-raiser called the Kili Climb for the Cure.

"At first, I thought it was nuts," said Neavins, 31. Climbers will have to sleep in tents, risk altitude sickness, deal with 80-degree temperature changes and go without showering for nearly a week.

But a summer spent in Uganda thinking it over and climbing for the first time changed her mind, and she signed on.

Since then, via e-mail, Slaven has been teaching Neavins, who left for Tanzania yesterday, about the disease and its effects on daily life. The two were paired by the Myositis Association of America in Virginia, which will work with the climbers to donate the money raised to a research program at the University of Southern California.

Colton, whose mother struggles with myositis, developed the idea because she wanted to do something - anything - to help her mother and others like her.

"The disease is devastating and life-altering," said Colton, 33. "It is a horrible thing to observe."

She watched her mother, 72, slip from being an active hiker and runner to a woman who cannot stand unassisted.

Colton quit her job teaching psychology in Massachusetts a year ago and moved to Pasadena, Calif., to care for her mother. The rest of her time has been spent organizing the climb, which she based on other projects like it and thought a fitting tribute to her mother, who loves hiking.

"There is one important positive effect this has had on me," Colton said. "It's helped me value my health much more. I live each day as well as I can, and I take nothing for granted. ... You have to make the most of life while you can."

The Kili Climb for the Cure will run from Saturday to July 25. Information about myositis or to make a tax-deductible donation: www.myositis.org/kiliclimb, or 540-433-7686.

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