Race to Erase MS Celebrates 30th Anniversary Amid Hopeful Medical Advances
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When philanthropist and jewelry designer Nancy Davis founded Race to Erase MS 30 years ago, the medical world was grappling with limited solutions for those affected by multiple sclerosis, the chronic neurological disease in which immune system cells attack myelin (protective sheaths) in the central nervous system.
Two years earlier, in 1991, Davis refused to accept the bleak prognosis handed to her at the age of 33 when she herself was diagnosed with MS. “They [doctors] told me I should just go home and go to bed. There were a lot of hocus-pocus remedies like bee stings — pretty crazy things that were not going to help you. It was quite scary and terrifying. I obviously did not listen.”
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Two years later, she founded the Race to Erase MS, which in three decades has raised more than $50 million to fund critical research on multiple sclerosis, which is estimated to affect nearly one million people in the United States. Celebrities who have MS include Selma Blair, Christina Applegate, Jamie-Lynn Sigler and Montel Williams.
“When we started 30 years ago, there was no known cause, no known cure, no drugs on the market,” says Davis. In addition to raising money through the annual gala — where KISS, Chicago and Earth, Wind & Fire have all performed — Davis started the organization’s Center Without Walls initiative, which includes an annual symposium to bring together doctors in the field in an effort to enhance communication and cooperation among research centers. This year’s doctors symposium is the day after the gala on June 3.
“Excitingly today, there are 25 drugs on the market to help stop the regression of MS which is pretty much a miracle,” says Davis. “If you are diagnosed today with MS, there are these really fabulous medicines that we have developed over the years and they can really help stop the progression of MS which is really everything. Ninety-two percent of people will be completely helped with these medications. It’s a very exciting time.”
And out of those 25 drugs currently on the market, Davis is proud to say that Race to Erase “did the pilot studies of 18 of those,” including the medications Ocrevus and Kesimpta. “It’s making a tremendous difference,” she says, adding that through the Center Without Walls “we fund eight different hospitals and it’s really important that we can continuously fund them. There’s so much happening and we’re getting so much closer to finding the cure.”
This year’s gala, taking place June 2 at the Fairmont Century Plaza Hotel, will feature a fashion show by French luxury brand Cinq à Sept (which opened a retail location in New York’s Soho neighborhood this spring) and a performance by Flo Rida. Says Davis, “We’ve had him twice before and everyone said, ‘You have to have him for your 30th.’ He comes and everyone gets up and dances and has a really fun evening. And Siedah Garrett, who wrote ‘The Man in the Mirror,’ is going to sing that song. She has multiple sclerosis.” The gala’s auction lineup boasts an impressive array of 400 items, including the donation of a brand-new Aston Martin DBX707 AMR23 Edition (“It’s like a $250,000 car,” says Davis). The night will also shine a spotlight on 30 honorees — “30 people who have been with us for 30 years,” says Davis.
Blair, who competed on the most recent season of Dancing with the Stars, bringing attention what it is like to live with MS, will also be at the event and will introduce Davis. “She’s gone through a lot of very different ups and downs in her health care and she seems to be doing really well now and very stable, and she’s in remission,” says Davis. “I have a daughter who’s a ballroom dancer and I watch how hard that is to do and that Selma Blair could do [Dancing with the Stars] having MS is nothing short of a major miracle. Hats off to her for having the tenacity.”
But even with so many advances on the medical front, Davis underlines that “we haven’t won yet. We haven’t won the Race to Erase MS.” She adds that, many “people with chronic progressive and primary progressive MS, which is about 15 percent of the MS population, we don’t have a lot of ways of remedying that. That’s one of the things we’re really focused on.”
As for the status of Davis’ own health? With gratitude, she shares, “I’m able to live a good quality of life. You know what? I am probably the luckiest person in the entire world who’s living with MS. Every so often, they look at my MRI’s, they can’t believe I’m having such a free independent life. I pinch myself and I’m doing really, really well.”
“Every so often I will have an MS attack and it’s scary and terrifying but I’ve been really really lucky. I’ve been able to be a full-time mother and run two charities — I run another charity called Cure Addiction Now — and I have a black belt in karate and I can ski and I’m able to do all the things they told me I would never be able to do,” continues Davis, who is also the founder of the jewelry brand Peace and Love.
Her advice to others who have MS: “You have to get an early diagnosis and you have to get the correct medication and really be an advocate in your own healthcare.”
The Race to Erase MS is also selling a specially designed t-shirt with Cinq à Sept that raises money for the nonprofit and celebrates the organization’s 30th anniversary. 100 percent of proceeds from the sale of the t-shirt go to fund research to fight the disease.
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