Sherri Snelling, talked with Nancy Davis, the formidable force behind the Nancy Davis Foundation for Multiple Sclerosis as she prepared for her 19^th Annual Race to Erase Gala event held May 18.  Since May is National Multiple Sclerosis Awareness Month, Sherri profiles 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 multiple sclerosis (MS).

That was 21 years ago.  Since then Nancy Davis, daughter of the late billionaire oil tycoon and former owner of 20^th Century Fox Marvin Davis and 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 to find a cure for the multiple sclerosis (MS) that has been her constant companion for the last two decades.  In its 19^th 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).

Connecting Those Who Can Create a Cure

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 that have established leading, innovative research programs include: UC San Francisco, Harvard, Yale, USC, Johns Hopkins, and Oregon Health Sciences University.  These six leaders are dedicated to understanding the cause of MS, advancing the development of new treatments and ultimately leading the race to find a cure for the autoimmune disease that currently attacks 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 literally tear down the bureaucracy that typically invades 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.”  To that end she applauds the efforts of the six universities participating in CWW and says that it is the “vision, insight and flexibility of these extraordinary doctors” that will help end MS.

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.

Lean On Me

While Nancy’s form of MS is the most common, known as relapsing/remitting which 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 which makes her roles as mother, author, jewelry designer, fund-raiser and non-profit foundation leader even more admirable.

“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,” says Nancy.  “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.”

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 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.

Her mother Barbara, no slouch in the fund-raising ranks herself as the founder of the prestigious Carousel of Hope Ball to benefit the Barbara Davis Center for Juvenile Diabetes which for more than 30 years has been a to-die-for ticket among Los Angeles and New York VIPs, told me how proud she is of her daughter, “Nancy is tireless at working to find a cure for MS – not just for herself but also for all the people she has met who live with this unpredictable disease.”

Kathy Hilton, fashion designer, Beverly Hills society maven and mother of Paris and Nicky told me at the gala event, “We will have fun tonight – Nancy makes sure of that with the people she gathers, the music, the fashion show and the great silent and live auctions – but, come Monday, she will start working on next year’s event.  She never sits when there is work to be done.”  Kathy and her real estate tycoon husband Rick Hilton know full well the impact of MS having cared for Rick’s mom who died with MS a few years ago.

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 Ritchie), she would rather rattle off the latest medical breakthroughs in therapies and medications to help those living with MS.  When I mentioned my closest friend suffers from MS, Nancy gently grilled me about what drugs she has tried, asking if she has thought about the alkaline diet, and does she know about this and that therapy.  It is refreshing to see a woman who could rest on her laurels of being a society princess, instead be more like Joan of Arc – a woman warrior in the fight against this chronic illness.

Her army is those famous friends who turned out for the Race to Erase event this year 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 and 1,000 other luminaries.  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 25 years and are dedicated to the cause to find a cure.

Nancy had the celebrities walk the orange carpet and when I asked her about the orange color, she said simply, “Orange is a happy color and you have to be positive when you are battling MS.”  She ends each year’s event by gathering those famous friends in a stirring rendition led by the musical giants in 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.”

As the song’s refrain resonates from the Century Plaza Hotel’s ballroom, Nancy Davis certainly has friends she can lean on and those diagnosed with MS can lean on her knowing she won’t stop until a cure is found.

Click here to view the celebrity interviews from this event.

Sherri Snelling is writing a book on celebrity caregivers and the lessons of love and caring that will be published in January, 2013 by Balboa Press, an imprint of Hay House Publishers.