More MS news articles for June 2001

Channeling Adversity Into a Mission

Rockville Lawyer Taps Business Skills To Found a Nonprofit

http://washingtonpost.com/wp-dyn/nation/states/md/A48869-2001Jun10.html

Monday, June 11, 2001; Page E07
By Margaret Webb Pressler
Washington Post Staff Writer

Karen Modell didn't think anything of it when, after finishing a cruise with her husband in 1997, it took several days to get her "land legs" back.

It turned out to be the first sign that Modell had multiple sclerosis, a degenerative disease of the central nervous system. She was 34, a lawyer in private practice with her husband and the mother of two young children.

Since then, Modell has gone through what many MS patients face: frightening flare-ups of sometimes mysterious symptoms, intense fatigue, depression, countless doctors and complicated medical bills.

The first few years were overwhelming, but Modell was determined not to give her life over to the incurable disease that will eventually leave her in a wheelchair. For three years, she threw herself into research about the condition and sought the latest treatment options, both physical and emotional.

She emerged from the process at peace with her situation and in better control of her disease -- but reaching that point was needlessly painful, she said. An already traumatic experience was exacerbated by a lack of services for MS patients and their families in the Washington area, she said, along with inadequate medical resources and a lot of bad advice.

Empowered by her discoveries about living with MS, Modell wanted to help others in the same situation. So she joined the growing ranks of people turning adversity into a mission by starting a nonprofit organization.

"I thought to myself, 'I've got to do something to further help the MS-ers out there,' " Modell said, sitting in the sunny family room of her large Rockville home, which doubles as the headquarters for her fledgling organization.

For a year, Modell has worked full time to get Montgomery Multiple Sclerosis Center Inc. off the ground. The services she hopes to provide include support groups, educational programs, exercise classes, recreational activities and medical case management. Already, she has planned out the center's structure, incorporated as a nonprofit and assembled a board of directors. Now, she has to find the money: She has raised more than $30,000 so far and she needs another $170,000 before she can open the center's doors.

The Washington area is brimming with nonprofits -- 42,000 in 1998 -- but that doesn't mean it's easy to launch one with goals as ambitious as Modell's. In many ways, in fact, it's just like starting a conventional business -- something she has done before. But it's different in one key sense.

"The process itself is no different -- it's a lot of research, a lot of money raising," she said. "But with a nonprofit it's different because I have this fullness in my heart that I can't even explain. It's totally selfless. It's totally to help other people."

Modell may be driven, but she is still lucky that she has previous experience to draw on.

Shortly after graduating from law school at American University in 1987, Modell decided against a legal job and instead opened a china and gift shop. She had fallen in love with the little store in Pittsburgh where she and her husband has registered for their wedding, and she wanted to replicate it in Bethesda.

Nevermind that she knew nothing about the china business. It just seemed appealing, and it certainly sounded like more fun than the law jobs for which she'd been interviewing.

After tons of research and money raising, Modell opened a shop in downtown Bethesda called Simple Elegance. It thrived in the booming economy of the late 1980s. "I loved it," she said.

But fortunes change, sometimes quickly, in the retail business. First, the building which Modell's store was in underwent a total renovation, disrupting access to the store. Then the Gulf War pushed down business a little more, as did the following recession. And Modell had her first child.

"It got, just, not fun," she said. "People started getting nasty."

Modell joined her husband in his new private law practice, doing real estate and probate law. She worked a flexible schedule to be with her children. It was during a much-needed break from that grind that Karen and David Modell treated themselves to a short cruise.

It marked the beginning of Modell's medical odyssey.

Modell has a relatively serious case of MS, suffering frequent "exacerbations," when symptoms can appear all of a sudden, such as balance problems, tremors or numbness. Usually they last for a while and then recede, but often not completely.

The symptom that first sent Modell to the doctor, a month after returning from the cruise, was a sudden erosion of her vision. An ophthalmologist sent her for an MRI, and the radiologist quickly diagnosed her.

Since then, much of the information Modell has gotten on the disease has come from her research, because there are few doctors in the area devoted to studying of MS.

"In the metro area, particularly in Montgomery County, there are myriad neurologists, but they're all general neurologists," Modell said. "If you want someone on the forefront of what's going on, that's an MS specialist."

Each exacerbation, when it subsided, left Modell with some lingering impairment. Though her vision returned, for example, she was left with trouble "scanning" from one line to the next, severely limiting her ability to read conventional text in a book.

As Modell's condition deteriorated, she began learning more about her disease and the latest treatment approaches. Ultimately, she did a five-day program with the Heuga Center, a nonprofit organization based in Vail, Colo., that is aimed at improving the lives of people with MS and their families. It runs programs in different cities around the country that bring patients together with experts in the field so they can learn more about their disease and how to live a fuller life despite its limitations.

"That was where my life turned around," Modell says. "That was where I learned I'm perfectly fine with my MS."

In the Heuga program, Modell met with physical therapists who knew the specific needs of MS patients, learned the best way to exercise, heard the latest medical research and even went skiing -- something she never would have tried on her own. The Heuga Center was founded by skiier Jimmie Heuga, the bronze medalist in the 1964 Olympics, who was diagnosed with MS in 1970.

In 1998, when Modell returned from the Heuga program, she realized how few services were available in the Washington area. The local chapter of the Multiple Sclerosis Society, she said, has many good programs and publications, but it cannot do everything.

Yoga and tai chi, for example, are great exercises for people with MS, but it's hard to take a conventional class. Modell wants to offer those programs tailored to MS patients.

But it was really her family that drove her to start her organization. Modell may have come to terms with her disease, but her family is still struggling with it.

"My daughter was drastically affected, but there are no support groups for children of people with MS in the entire metro area," Modell said, and few support groups for caregivers.

Modell has put up a Web site, www.montgomerymscenter.org, and has dozens of grant proposals outstanding. Among her targets are the drug companies that make the most common treatments for MS. Several have said they would commit funds when she's reached a certain level of money in the bank. She's also hoping that the popular television drama "The West Wing" will help her fundraising efforts by raising awareness of the disease: The president on the show suffers from MS.

When Modell gets the money she needs, she hopes to find 2,000 or 3,000 square feet of space near Shady Grove hospital, which is close to her home -- important since there are days she can't drive herself. Once she opens her doors, she said, she hopes to serve the 6,000 people in the Washington area who have MS, as well as their families.

Her larger goal, though, is for people everywhere to have access to similar programs.

"It would be really great if someone, down the road, would use me as a model, and do this somewhere else," she said.
 

© 2001 The Washington Post Company