Thirteen years ago, Sharon Monsky was on top of the world. She had completed an MBA from the Stanford University business school and earned a place on the fast track at McKinsey & Co., an international management-consulting firm.
On her office desk she kept a large jar of M&M candies, a colorful calling card from one of her biggest clients.
When she was in Chicago recently for a fundraiser at the East Bank Club, Monsky, 40, wore an oversize green sweatshirt liberally dotted with plastic replicas of the green, yellow, red and brown candies.
She says it is one of the few reminders of her days with McKinsey. Almost everything else associated with that time in her life-the 70-hour work weeks, the globe trotting and the burgeoning career-is gone.
In the summer of 1982, Monsky, then 28, was diagnosed as having diffuse (severe) scleroderma, a little-understood degenerative disease that is more prevalent than widely known diseases such as multiple sclerosis or muscular dystrophy. Scleroderma afflicts hundreds of thousands of Americans, but predominantly women in the prime of their lives.
Meaning “hard skin,” scleroderma occurs when for unknown reasons the immune system begins to attack itself, manufacturing massive amounts of the protein collagen.
The collagen produces fibrous scar tissue that hardens and thickens the skin of the face and hands and chokes off internal organs, interfering with their normal function. Doctors say it’s as if the victims’ bodies turn to stone.
The severe form of this disease is fatal, with 65 percent dying within seven years.
In 1981 Monsky began the downward spiral that led to full-blown scleroderma. Initially, she was tired all the time, constantly craving sleep. Then her joints began to ache, especially in her fingers, which had become hypersensitive to cold. By the time she went to see a doctor, she could barely grasp a pen or bend over to tie her shoe.
It took 18 months and as many doctors to find the correct diagnosis, which was finally made at the Stanford University Medical Center.
“After I was diagnosed, I went to the library to see what I could find out about scleroderma. There was nothing. And the assorted rheumatologists, dermatologists and immunologists I saw could tell me very little beyond what I might die of and when.
“One doctor, obviously knowing little of the disease, told me I had only `a handful of months’ to live,” she says.
“I decided right there and then that I was not going to place my life in the hands of someone who was saying that I was not going to make it, but didn’t know why.
“I was going to give it my best effort to beat this disease and make a contribution in my lifetime that might help others to not suffer.”
By 1985 Monsky was severely arthritic, had only 50 percent lung capacity and had open sores over much of her body. Her growing debilitation forced her to resign from McKinsey & Co.
The skin of her face and hands had stretched taut and waxy over her bones. She was unable to close her lips over her teeth.
“But my mind could function and my drive was in place,” she says. “They were telling me to put my business skills to work and do something that has never been done before: Establish a foundation, a collaborative research effort that would include the best scientists and doctors from the best medical centers and private industry in the country, strictly for the purpose of raising money to find a cure for scleroderma.”
In the fall of 1986, in a borrowed conference room in San Francisco, Monsky and a small group of family and friends conducted the first meeting of the Scleroderma Research Foundation.
“A year later we gave out four research grants of $25,000 each. In just six years we have raised almost $2 million and funded 30 studies worldwide. That’s unprecedented for such a young foundation.
“Today alone we raised $250,000,” she says, referring to the foundation’s latest fundraising effort, the second annual Trails-to-Sails bike-a-thon sponsored by the East Bank Club.
“This is what keeps me going,” Monsky says, gesturing to the hundreds of people in green and purple jerseys mounting their bikes at the East Bank Club to begin the 100-mile ride across Illinois, Indiana and Michigan to raise money for scleroderma.
“You wouldn’t believe the number of people who have come up to me here and said, `My mother died of scleroderma. Thank you for giving me the opportunity to do something for her.’
“I have had women with the disease say to me, `Thanks for giving me the courage to show my face in public and to do something positive to help myself.”‘
When it was time to begin the bike-a-thon, Monsky, the green sweatshirt draped loosely over her, climbed slowly onto a flatbed truck near the starting line.
“Good luck and be careful,” she shouted to the bikers, waving hands that were gloved for protection against a chill. “Let’s go!”
Somewhere in the moving pack of 500-plus riders was Joe Rossi, a senior manager at the East Bank Club whose wife died in 1991 after a long battle with scleroderma.
“When my wife was still alive, we saw Sharon being interviewed” on a television news show, Rossi said later.
“I could see that Sharon, like my wife, was a fighter. It was so encouraging to see her trying to do something to make the disease a household word.
“After my wife died, to be honest, it was a struggle just to survive. And I forgot about Sharon until I met her again last year. When I saw her for the first time it was painful, because she reminded me so much of what I had lost,” Rossi says.
“But being around Sharon is such a joy because she values life so much. She gave me the courage, single-handedly, to bike 100 miles for scleroderma-to do something positive in my wife’s memory,” he says.
Monsky’s efforts to defeat scleroderma are not limited to the foundation.
“I asked myself, `Sharon, what else can you do to make a difference?’ “
When the idea struck her in 1990, Monsky took the next plane to Washington.
“I figured I had to make Congress aware of what scleroderma is and the need for funding of research at the government level,” Monsky says. “I told Congress: `I’m doing my part. All I ask is that you match my efforts.’ “
After lobbying Congress and testifying before congressional committees, Monsky was appointed to the advisory board of the National Institutes of Health, a slot usually reserved for prominent scientists.
“Today, I am among 18 people who decide what monies the government allocates to what research and where,” says Monsky, in her second year of a four-year term.
“And we all know what is on top of my list,” she says with a laugh.
Every three hours Monsky injects a genetically engineered hormone called Relaxin into her upper thigh. Produced normally during pregnancy, this protein allows connective tissues to stretch and become more elastic.
Relaxin is a direct result of research funded through Monsky’s own efforts.
“And guess what! I am the first person to try this experimental drug treatment,” she says.
Monsky is particularly excited about the progress that has been made by scientists at the San Francisco Bay Area’s Scleroderma Research Center (another Monsky brainchild). They recently took the first step toward finding a cure for scleroderma by creating an animal model for the disease that uses mice born without immune systems.
Apart from the foundation, the most important thing in Monsky’s life is her family-her husband, Mark Sher (who rode in the Chicago fundraiser), and their three children, Max, 8, Samantha, 5, and Montana, 3, all of whom were conceived against doctors’ advice.
“All I ever heard was: `Don’t, don’t, don’t, you can’t, you can’t, you can’t.’ Well, frankly I don’t respond to that,” she says. “My children are such a big part of my life, I don’t know that I would be here without them.”
“Max is only 8 years old, but he knows Mommy is very sick. When I get up in the morning, it is a game with Max to get up and dressed as fast as possible and to run down to Mommy’s room to help her button her shirt,” Monsky says.
“Earlier this year, Max saw me on television with actor John Candy during a fundraiser. He was so excited. I mean that impressed him, Mom with John Candy.
“But when I came home exhausted, having eaten my rubber chicken and survived another day, he looked at me and said, `Mom, I am so proud of you.’
“That’s what gets me out of bed in the morning.”
“When I am gone, my children will know who I was and what I stood for,” she says. “If it is true, as the doctors say, that it is too late for me even if a cure for scleroderma is found, at least I will have accomplished that.”
The Scleroderma Research Foundation is at 2320 Bath St., Suite 370, Santa Barbara, Calif. 93105; telephone 800-441-CURE.
