by Christina Medvescek

When people talk about Lois West, they tend to gush.

For example, listen to Robert Ross, MDAs president & CEO: "Shes been a devoted volunteer for many years. Shes someone whose entire life has been dedicated to serving others."

Or Timmi Masters of Beverly Hills, MDAs secretary and a longtime member of the Associations Board of Directors: "Shes a whiz at everything so very easygoing that everyone feels comfortable around her never complains "

Ross: " the kindest, most considerate person "

Masters: "When MDA asks Lois to do something, she doesnt give an excuse, she just does it."

Ross: "Smart as a tack and can read anybody."

Masters: "Shed make a Valium look nervous."

Ross: " remarkably self-effacing, a lovely human being "

Meet Lois West, 82, a 34-year member of MDAs Board of Directors, former first lady of South Carolina, unflappable hostess to heads of state, and former middle-of-the-night child-turner at MDA summer camps. She calls herself "just a housewife, basically."

It Started at Summer Camp

Mrs. John C. West "Lois" to just about everybody - has been involved with MDA since someone asked her to help with a summer camp in the early 1960s. Interested in rehab programs for people with disabilities since she majored in physical education in college, West took to MDA camp at once.

"When we started with summer camp, we had six or seven states lumped together," she recalls in her soft, elegant Carolina drawl. "I got to know the kids and their parents, and got to understand for a week what it was like for parents all year long.

"I got to know the personalities of the kids and I was so impressed by their wonderful spirits! It always impressed me that I never turned a child at night who didnt smile and say, thank you. The children really have a courage. They taught me a lot more than I taught them."

As a camp volunteer, she downplayed her status in South Carolinas power circles. But it wasnt long before she was finding ways to bring that power to bear on behalf of kids and adults with disabilities.

In the late 1960s and 1970s, she helped organize and direct MDAs camp at Winder, Ga., which was among the few handicapped-accessible camps. She later became director of the MDA summer camp at York, S.C., where her three children and future daughter-in-law volunteered. ("Thats the way I got to know I liked her," she recalls.)

As first lady of South Carolina from 1971 to 1975, West was influential in getting funding for and helping design Clemson Universitys Outdoor Laboratory, an innovative barrier-free summer camp and outdoor recreation research facility.

Steel Magnolia

By 1969, MDA had snagged West for its Board of Directors and she became a gentle yet energetic force in the organization. The gentleness belied a backbone of steel.

Former Gov. West recently told a reporter for The State, a Columbia, S.C., newspaper, of a time during the turbulent civil rights era when he was running for office and was threatened by the Ku Klux Klan for his advocacy of racial integration. The hate group even ran Mrs. Wests car off the road.

Known as a crack shot, she sent word to the KKK grand dragon that if anything happened to her husband, he neednt worry about the grand jury she would kill him herself.

Although few have seen that side of her, none who know her have trouble believing it.

"If shes your friend, shes your friend and shell do anything for you," says Masters, who developed a tight friendship with West during the years theyve spent together on the MDA Board. "Shes a very strong woman."

Often that strength shows in her uncomplaining, gracious adaptation to whatever life sends through the door. Sometimes its 12 for dinner or once, 200 for lunch with little or no advance notice. (She quickly mixed up a salad in a clean garbage can for the lunch.)

Masters tells of a time when West fell and knocked out some front teeth the day she was to host the MDA Board at her home on Hilton Head Island, S.C. She managed to get a temporary fix and carry on so cheerfully her guests didnt even realize what had happened.

When President Carter appointed her husband U.S. ambassador to Saudi Arabia in 1977, West would fly back to the States for MDA Board meetings in between hosting dinners and luncheons for the protocol-conscious Saudis. Her diplomatic but firm insistence on U.S. wives participating in some ceremonies along with their husbands a revolutionary idea in Saudi culture paved the way for later Saudi openness to female heads of state like Margaret Thatcher.

A Strong Guiding Hand

The Faces of Lois: West (right) with her good friend Timmi Masters and (above) in an official MDA Board of Directors photo and as a counselor at MDA camp in the 1970s.

From 1991 through 1994, West served as MDAs first female president (a position now known as chairman of the Board), presiding over a period of great difficulty, change and advancement in the Association.

Her tenure included the discovery by MDA grantees of the genetic roots of several neuromuscular diseases and the exciting early promise of stem cell and gene therapies. It also included soaring health care costs that severely taxed the Associations resources, and the huge undertaking of moving the organizations headquarters from its New York City offices to more frugal Tucson, Ariz.

West is clearly proud of MDA and all it has accomplished. To her, its not an organization but a big group of people, from individuals and families affected by neuromuscular diseases, to volunteers, MDA field staff, doctors and researchers around the world. Its her turn to gush when she honors them: "The care and concern they show, the love they express, its a very moving thing. I feel privileged to meet them."

An especially poignant moment for her came at a Board meeting in the early 1990s, when a film was shown about people with myasthenia gravis, one of whom could only move a few fingers. After the lights came back on, the severely impaired woman from the film walked onto the stage and thanked MDA for developing plasmapheresis, a blood-filtering process that had reversed most of her symptoms.

"It was one of the most dramatic things Ive ever seen," West enthuses.

"They do so much good work," she continues. "The whole organization - its a good group and they care.

"One of the things about MDA is that theyre flexible. If something promising comes up with gene research or stem cells, we can jump on it. Were set so that if we see the way to help dramatically, we can move fast. We dont have a lot of bureaucracy. Thats the key."

Always a Camper

West ducks the praise others want to pour on her head. "Well, I havent done much! Youve been talking to my prejudiced friends! I do what ordinary people do."

This is typical behavior, says Masters, who recalls going along with West to a luncheon and not finding out until after it started that West was being honored at the event.

West has cut back on some activities now that shes "getting long in the tooth," but she continues to serve
as chairman of the MDA Executive Committee, in addition to looking after her husband, four grandchildren and five great-grandchildren. "One of my grandsons is an orthopedic surgeon and one is in the third grade, so it varies," she smiles.

And though its been years since she was a one-on-one volunteer at MDA summer camp, shell always be a camper in her soul.

"Shes so down to earth," laughs Masters. "I remember once when we were golfing and it was really hot. Lois just took off her cap, filled it with ice water and put it back on her head. Not many women would do that. But thats Lois."