Our caregiving contributor, Sherri Snelling, talked with Nancy Davis, the formidable force behind the Nancy Davis Foundation for Multiple Sclerosis (MS) as she prepared for her 19th Annual Race to Erase Gala event held this month. May, National Multiple Sclerosis Awareness Month, is an appropriate time to profile this fearless woman, who has been living with MS since 1991 and has galvanized the Hollywood film, TV and music industries, Beverly Hills and New York society and the medical community to raise funds and awareness to find a cure faster for MS.
It started with a tingle in her fingers after she finished a day skiing on the slopes in Aspen. A lifelong skier, she chalked it up to a little strain from tearing up the moguls all day. After all, she was only 32 years old and a young mother – a little too soon to be contemplating the proverbial rocking chair. When her other hand started tingling the very next day, then her whole hand went numb and then a few days after that her eyesight started to go, a future in a rocking chair was about all the hope doctors were giving her as they told her she had MS.
That was 21 years ago. Since then Nancy Davis, daughter of the late billionaire oil tycoon and former owner of 20th Century Fox Marvin Davis and his wife Barbara, has used her enduring inner-strength, her family and personal connections and her incredible ability to bring people together for a common goal. In its 19th year, the Nancy Davis Foundation Race to Erase MS gala event, held annually at the Century Plaza Hotel among the glitterati in Beverly Hills, has raised more than $30 million to fund the Foundation’s Center Without Walls (CWW).
Nancy’s brainchild, CWW, provides the support that has permitted the medical community to link together multidisciplinary scientific programs and expertise across the country. The Center’s network of the top six MS institutions include: UC San Francisco, Harvard, Yale, USC, Johns Hopkins, and Oregon Health Sciences University. These facilities are dedicated to understanding the cause of MS, advancing the development of new treatments and ultimately finding a cure for the autoimmune disease that currently afflicts more than 400,000 people in the U.S., with 200 more people diagnosed every week.
What is so remarkable about Center Without Walls is that Nancy was able to tear down the bureaucracy that typically slows the research community, where egos can sometimes outweigh outcomes. Nancy told me, “It just didn’t make sense to me to have these wonderful research teams duplicating effort – if we want to find a cure faster, we have to work in cooperation and share information so that we get there in 10 years instead of 20.”
Some observers may believe that connecting the nation’s top researchers to lay down their competitive impulses and instead work together seems Herculean and near impossible. But impossibilities are not part of Nancy Davis’ vocabulary. “My motto is take the impossible and make it possible,” says Nancy.
“When I was diagnosed, there were no drugs on the market to help people with MS, now there are seven with three more being approved by the FDA. Because of my family’s name and money, people told me to build a building, but we didn’t need a building. We needed communication and solutions and we needed them fast and that is how my foundation and the Center Without Walls got started.”
Nancy’s form of MS is the most common, known as relapsing/remitting. That means she will have episodes of numbness or paralysis in the extremities or problems with eyesight, but then once the episode passes, she has periods of almost complete remission. The fatigue that is a common symptom of MS continues to challenge Nancy, who is the consummate multi-tasker. With three grown sons in their 20s and 30s, you would think this mom with a chronic illness was done with child-rearing. But, seven years ago, she and second husband Ken Rickel had twin daughters.
As Nancy “dove into the disease” her desire to find a cure faster was all about her kids. “I was a young mother at the time and because not much was known about MS then, all I could think about was that my freedom, my future and my ability to be a mom was going to be stripped away from me – it was a very scary time,” she reveals.
She also told me that her diagnosis caused her first marriage to collapse. “When you face a potentially devastating disease and possibly bleak future, you find out really quickly who will stand by you and who will run.” The silver lining for Nancy was finding her second husband who she says gives her the ongoing “confidence and courage” to continue her fight for a cure and follow her other passions like her jewelry design.
While Nancy could tell stories about all the fabulous people she has met in her life (she lived three doors down from Elizabeth Taylor in Bel Air, her father played golf with then-President Gerald Ford, her mom shoe shops with Nancy Reagan, she is godmother to Nicole Richie), she would rather rattle off the latest medical breakthroughs to help those living with MS
Her army is those famous friends who turn out for the Race to Erase event, including music legend Stevie Wonder, “American Idol” winner David Cook, country and western star Clay Walker, actress Marg Helgenberger, whose father died from MS, Cybill Shepherd, LaToya Jackson, Khloe Kardashian and husband Lamar Odom, among others. Right by Nancy’s side as co-host of the event was fashion designer Tommy Hilfiger, who has been involved with the Foundation since 1997 and his brother Andy whose fashion line, Andrew Charles, was part of the evening’s show. The Hilfiger brothers have a sister who has battled MS for over 40 years and are dedicated to the cause to find a cure.
She ends each year’s event by gathering those famous friends in a stirring rendition of the classic Bill Withers song, “Lean on Me” which is also the title of her 1996 book,” Lean on Me: 10 Powerful Steps to Moving Beyond Your Diagnosis and Taking Back Your Life.”
“Nobody signs up for this illness,” says Nancy. “A diagnosis of MS is not just about the person with the disease, it is about the family and you have to lean on each other to carry on. It sounds crazy but MS has made me grateful because I appreciate my life and friends more.”
For a red-carpet view of Nancy Davis and her courageous campaign, click here for a special video.
Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers. It will be published in January, 2013 by Balboa Press, an imprint of Hay House Publishers.