More MS news articles for May 1999

Time to Get Busy

When Nancy Davis was diagnosed with MS, she got to work lining up funding and coordinating research--in hopes of finding a cure.

http://www.latimes.com/HOME/NEWS/LIVING/topstory.html

By MIMI AVINS, Times Staff Writer

The day Nancy Davis was told she had multiple sclerosis, she didn't feel like a lucky girl.

"You're a lucky girl," she heard the doctor saying, as she sat in his office in Santa Monica, fighting back tears. What on Earth was he talking about? she wondered. He was pointing at her charcoal-colored X-rays, tracing circles around the cloud-like spots on her brain and spinal cord that were causing her hands to go numb and her vision to blur. A neurologist, he must often tell patients they have brain tumors, that the cancer growing in their heads will soon kill them. So, in a relative sense, the pretty blond, gray-eyed 33-year-old woman sitting in his office that 1991 morning was fortunate. She only had a degenerative disease of the central nervous system that progresses at widely varying rates in different people.

"What do I do now?" she asked.

It was one of a volley of questions she wanted to fire at him, including the most frightening, and unanswerable one: Will I spend the rest of my life in a wheelchair?

"Go home and go to bed. Watch TV," the doctor replied.

"For how long? Till the numbness goes away?"

"Just go home and lie down. Take it easy."

The doctor was talking to the wrong lucky woman. Perhaps he was thinking that since she was the daughter of real estate and oil tycoon Marvin Davis, who, with a net worth of $2.7 billion, ranks 55th on the Forbes list of wealthiest Americans, she could go home to her Bel-Air haven and be waited on. Servants would look after her three growing sons. One of the maids would bring fresh flowers into her room every day. If a battery in the remote control needed to be replaced, it wouldn't be Davis' problem.

Some other poor little rich girl might have accepted the part of pampered patient. Davis chose the role of MS advocate and activist instead. In the eight years since she was diagnosed, she doggedly tracked down information about the disease, worked to make the latest findings available to doctors and patients, established a foundation to raise funds for research, personally directed the fund- raising efforts of the Nancy Davis Center Without Walls, made sure money wasn't wasted feeding a greedy bureaucracy, and directly and creatively involved herself in decisions on how hard-won dollars were spent.

Weekend Fund-Raiser  in Las Vegas 

The sixth annual Rock to Erase MS weekend at the Hard Rock Hotel & Casino in Las Vegas on Friday and Saturday will be the largest and most star-studded event her organization has mounted. Guests will pay $2,500 each to stay at the newly expanded hotel, attend parties, be entertained by Hootie and the Blowfish, the Goo Goo Dolls, Cheap Trick and comedian-actor David Spade, see a Tommy Hilfiger fashion show and participate in a 5- kilometer run and walk.

For many in the group, the highlight of the weekend won't be fabulous buffets or seats at invitation-only concerts. It will be learning that the three drugs now improving the lives of thousands of MS patients weren't available just five years ago and that the scientists who developed them believe they are close to another breakthrough.

Davis will be rocking and high rolling with supporters of her cause partially because she didn't listen to her first doctor. "If I had gone to bed when he told me to and stayed there for the rest of my life, my muscles would have atrophied; I would have felt sick all the time; I would be depressed," she said. "Eventually, I wouldn't be able to walk anymore." Her informed disobedience deserves some credit for the fact that Davis has been symptom-free for almost two years. "When I learned I had MS, I wasn't in a great marriage, and I worried if anything happened to me, who would take care of my three kids?"

A year later, she divorced her husband.

"It was the best thing I could have done for my health," she said. Six weeks later, she met investment banker Ken Rickel in Aspen, Colo. They married in 1994.

After her diagnosis, she sought a second medical opinion, and a third, and a fourth and a 10th. Initially, she was hoping to find a doctor who would tell her the diagnosis was a mistake. If that wasn't to be, at least she would get an education.

The MS specialists she met all confirmed her diagnosis, but they weren't as defeatist as the doctor who first made it. They told her there were things she could do to manage her disease and improve her prognosis. When Davis wasn't pumping physicians for information, she searched medical libraries for current research. "I was scared," Davis said. "I didn't know what MS was going to do to me or what the ramifications were of living with MS. I felt better when I understood more of what was going on. I'm not the type to stay depressed about anything. It's not my way."

Following in Her  Mother's Footsteps

Her mother had shown her another way to confront adversity, a path forged by persistently refusing to accept the status quo. When Davis' younger sister was diagnosed with juvenile diabetes in 1975, Barbara Davis reigned as social queen of Denver, where the family then lived. When she found there was no medical facility within a five-state region equipped to treat diabetic children and counsel their families, she endowed the Barbara Davis Center for Childhood Diabetes at the University of Colorado Medical Center. Proceeds from the Carousel of Hope Ball, a biannual extravaganza Barbara founded and chairs, still support the center.

Barbara Davis was a clever pioneer who recognized how effectively the famous could draw moneyed locals as well as national publicity to a charity event. By the time Davis made the decision to raise money for MS research, she had the advantage of years of experience working on her mother's high-profile, high-stakes benefit.

Her impatience with the state of MS research was fueled by attacks that followed a pattern: three fingers on her right hand would tingle, then become numb. Three days later, the whole hand would feel dead. Three days later, she'd notice the telltale sensation in the fingertips of her left hand, and three days after that, the whole left hand would lose feeling. Then her stomach would go numb, and she'd start seeing double or have trouble focusing. The symptoms that occurred last would return to normal first. Five months after the signs of an attack appeared, they would mysteriously vanish.

A wealthy, well- connected woman, experienced in fund-raising, imbued with all the motivation that fear and suffering could provide--those engaged in MS research couldn't have invented a more ideal angel.

"The MS society was so happy when they heard I had it. It was like they'd hit Lotto," she said. Although her sweet, childlike voice projects an innocent quality, Davis is self-aware enough to know that when she asked to meet with a doctor, the response was different from what an anonymous patient might expect.

"Everyone hopes that you'll build a building," she said. "I met many great doctors, and I wanted to put my money in the right place." Ultimately, she decided that any funds she might raise or donate shouldn't go to a place at all, and certainly not to a new hospital with her name above the door.

"So many of these doctors were telling me about the great research they were doing, and how they were the only one doing it. Then I'd go to the next person, and they were doing the exact same thing." Duplicating research efforts was an obvious waste of time and money. Davis also found that because the results of fruitless studies weren't publicized, mistakes could be repeated continually.

At the end of a year of fact-finding, she concluded that communication was the most pressing need. The public would benefit if general practitioners, who diagnose and treat 90% of MS cases, were better informed, and the search for a cure could advance more quickly if researchers from a number of medical centers shared what they were learning about the disease.

Davis proposed that some top MS specialists form a consortium to share information. With the help of American Airlines and the Peninsula Hotel in Beverly Hills, doctors from Yale, Harvard, UCLA, UCSF and Oregon Health Sciences University have met in L.A. every three months since 1995. They also communicate by e-mail and with monthly conference calls.

A Passion for  Making a Difference

Stephen L. Hauser, chairman of the department of neurology at UC San Francisco, said, "What was so striking about Nancy when we first met was her passion for making a difference, and how clear-eyed she was in wanting every cent that was raised to go for medical research. Nancy saw that a constraint to progress was competition and uncertain funding, and by promising funding and removing competition, she's created a group of senior MS investigators who are working together in an absolutely seamless fashion."

Although perspective unique to an outsider, logic and the power of the purse were on Davis' side, her efforts failed twice.  "My concept was not traditional," Davis said. "That was the big buzzword. 'It's not traditional. It can't happen.' And I thought, why not? Why are you wasting all this time? There isn't as much money in MS as there is for a lot of other diseases. We have to spend every penny so carefully." For Davis, energy is as precious as cash. She knows that fatigue can be the enemy, bringing on symptoms that don't occur when she's well- rested, so she must be efficient.

Charming the head of a TV network into reserving more rooms than he'd had in mind for the Las Vegas weekend is child's play compared with what she's accomplished with the medical establishment.

"Sometimes people say no. I can handle no," Davis said. "I just can't handle yes when they mean no, because that means too many more phone calls I have to make to find out that the answer is really no."

Her job is made somewhat easier by the participation of a few consistently generous supporters. Tommy Hilfiger has been involved since the first Rock to Erase MS event in 1992 -- a ski weekend in Aspen -- providing, among other things, souvenir bags stuffed with Hilfiger clothes, gear and cosmetics. This year, Davis, Hilfiger, Hard Rock Hotel & Casino owner Peter Morton and John Sykes, president of the cable music channel VH-1, serve as chairpersons. (Hilfiger and Sykes are close friends, and both have sisters with MS.)

Pop stars such as Sheryl Crow, who get valuable exposure on VH-1, have entertained gratis at Race to MS concerts. Sykes later televises the performances, disseminating information about MS during fund-raising breaks. That sort of coverage fits Davis' grand plan: Greater visibility has a way of making a disease more socially acceptable, a phenomenon that can increase donations.

"When I was first diagnosed, people thought they couldn't get close to me or they'd catch it. It isn't contagious. You can't even give it to your children. It's important for the public to be educated so they treat those who have it with dignity."

"I have MS, but I'm doing better than anyone I know," she said. "And I feel that, because of the position I'm in, I have to help everyone else."

Eight years and several million dollars later, Davis echoes what once sounded like an odd remark, uttered on a grim morning in a pessimistic doctor's office:  "Every day that I wake up healthy and I can be with my kids and do great things like go skiing, I'm very appreciative. I'm a lucky girl."

For more information about multiple sclerosis, check the Web site http://www.erasems.com.
 

Mimi Avins can be reached by e-mail at mimi.avins@latimes.com