For 25 years, Karen Brown has been the heart and soul of an annual charity that started as a friendly backyard gathering and has now raised more than $3 million to fight muscular dystrophy.
Now Brown is now being sidelined from her hard-fought battle by another debilitating and sometimes fatal disease: scleroderma.
The bubbly 48-year-old former grocery store owner with the toothy smile and the big, jet-black hairdo has been so quickly and severely stricken that she must use a wheelchair. Her thin, tan hands are so frail she can no longer hold a pen to write or hold a phone to make a call.
Because of her condition, Brown will step down as the organizer and host of the Jerry Lewis Pre-Telethon Extravaganza after this Friday’s black-tie fund-raiser at the Beverly Hilton Hotel.
“Her energy will be missed,” said John Cassesi, who leads a nine-piece band that has played the fund-raiser for years. “It’s going to be very difficult for anyone to take her place.”
The disease has struck so quickly that her friends and family are still struggling to make sense of it.
“It’s really hard for me to deal with Karen’s diagnosis,” said Jann Carl, a host on “Entertainment Tonight” and a longtime co-chair of the event. “I keep telling people that God has a lot of explaining to do.”
Brown’s work has been noticed by Jerry Lewis, the national chairman of the Muscular Dystrophy Assn., who described Brown as “a world-class example of volunteerism.”
Brown suffers from systemic sclerosis, the most severe form of scleroderma. It is a chronic systemic disease that results in a hardening of the skin and internal organs due to an excessive formation of fibrous tissue.
Ironically, more people are affected by scleroderma than muscular dystrophy. An estimated 500,000 Americans have scleroderma; about 80% of them are women. There is no known cure or cause.
Brown’s condition was diagnosed only seven months ago but it has deteriorated quickly.
Brown’s doctor, Rodney Bluestone, said Brown’s prognosis is not good.
“She represents the worst example and most progressive form of this disease,” he said.
To organize this Friday’s event, she has employed her three daughters, ages 13 to 22, and her husband, Michael, to do much of the physical labor.
“Karen supports a charity and I support Karen,” Michael Brown said.
Since the event’s humble beginnings, Brown has been the sole organizer, the promotion’s manager and the mistress of ceremonies. She refuses to organize a fund-raising committee because she doesn’t have the patience, she said, to wait for a panel to decide on the color of the napkins or the flavor of ice cream for desert.
“I love everything about it,” Brown said during an interview at her Encino home. “That is why Friday will be difficult for me.”
Brown began raising money for muscular dystrophy when her former employer, the Southland Corp., held a fund-raising contest among its workers to benefit the fight against muscular dystrophy.
“I love a challenge, so I said ‘I can do this,”’ she said.
Brown won the contest by holding a cheese-and-wine tasting for 25 friends in her backyard. Each paid $5 to attend.
The party was such a hit that her friends urged her to organize the fund-raiser the following year.
As word spread among her friends and business associates, the fund-raiser grew to a major production. Over the years, Brown has held it a museum, a mansion and even on a yacht. Friday’s event is expected to attract about 500 people, each paying a minimum of $125.
“I just got hooked,” she said.
Brown says most of the money raised at the event is made during a silent auction. In the past she has auctioned trips, fur coats, cars, sports memorabilia and even a walk-on part in the TV show “Murphy Brown.”
She became the event’s emcee several years ago when the fund-raiser was held on the roof of a television studio and she forgot to get the lighting donated. When it came time for the silent auction, Brown had to describe the auction items over the loud speakers.
In the past few months, as Brown’s disease has advanced, she has found it more and more difficult to complete even the simplest of chores. “The sicker I become, the less effective I am,” she said.
Brown has been a soldier in the fight against muscular dystrophy for so long that she has become an expert on it. But she knows much less on the disease that has struck her.
Still, Brown said her own affliction has helped her understand the plight of the victims of muscular dystrophy. “Now I’m learning first hand,” she said.
Brown is optimistic that the event will succeed without her. If her health permits, she said she wants to continue to participate in at least some small way.
Her husband, Michael, hopes she wins her battle against the disease. But he wishes someone could put as much energy into fighting scleroderma as his wife has put into muscular dystrophy.
“What Karen needs is someone like Karen, only 25 years younger,” he said.