When Nancy Davis (not the former first lady Nancy Reagan, née Nancy Davis) was diagnosed with MS 30 years ago, her world came crashing down. With no known cure or treatment, the prognosis of a complete loss of independence would challenge the most resilient individual. But as a young mother of three, Nancy had everything in life to look forward to, and she refused to give up, even when the going got as tough as it can get.
Race to Erase MS is a foundation devoted to the treatment and eradication of Multiple Sclerosis. In addition to combating MS through clinical research by a network of the nation’s best doctors, Race to Erase seeks to increase public awareness about the disease that affects over 2 million people worldwide.
To date, Race to Erase has raised over 50 million dollars, a large percentage of which goes to funding cutting-edge research for the Center Without Walls program. This year, after two years of virtual events, Race To Erase is back on May 20th at the Fairmont Century Plaza Hotel for their 29th annual fundraising gala event. Featuring Nile Rogers & Chic along with an adaptive fashion show by Tommy Hilfiger (a longtime supporter of the cause), An original print by renowned photographer Lars Beusker will be up for auction.
“Our annual gala benefits the foundation’s Center Without Walls program, a unique collaboration between the world’s leading MS research scientists and investigators who have bolstered their individual efforts into the collective action that has led to exciting discoveries in the search for a cure,” says Davis “Our supporters provide hope, inspiration, and resources to those in the MS community.”
What were you told at your initial diagnosis?
Well, I think you know, when a doctor tells anybody they have a life-altering or life-threatening disease, your world kind of falls to pieces. I was told I’d never walk again. And life as I knew it was basically over. And I wouldn’t be mobile in any way. I would probably be able to operate the remote control of my TV and that would be about it.
What did you do after learning this?
When you’re diagnosed with any disease, you have to really give yourself a minute to digest what it means. I did a lot of research. I got a lot of second opinions. After going through a period of digesting all this, I found that I could change the trajectory of my disease and not live the negative prognosis that I was given. Now I have a black belt in karate, ski, and do everything that supposedly I’m not allowed to do, but I’m doing it. I’m living a very, different quality of life than what they had predicted for me, for which I’m very grateful. You have to be.
How did you beat the odds?
I’m not really good at taking no for an answer, especially when it comes to my life. I was a young mom with three children and I just couldn’t imagine that life was over or that I had nothing to look forward to. It was not in my job description of life. At the time, there was no known cause, no cure, no drugs on the market to help stop the progression and very little hope. I was fortunate enough to consult different doctors. I listened to the research they were doing at Harvard Yale, Cleveland Clinic USC, and Johns Hopkins. Most of the doctors were doing identical research and knew that they were the only ones doing it. And then a little light bulb moment went off in my head, and I decided if I could bring the best and the brightest to work as a team to never duplicate research, we could find a cure or treatments a lot sooner.
And where are we today, 30 years later?
The exciting news is there are 22 drugs on the market to help stop the progression. There were none when I started. Many of these are the drugs we’ve done the pilot studies. We have eight of the most brilliant research doctors comprising the Center Without Walls. We had these doctors work together every month sharing ideas and information. Research takes a lot of time and it’s very expensive, so we thought we could be more sleek and lean and get where we wanted to go a lot quicker. So I do an event called Race to Erase MS.
Why do you call it a race?
Because we’re in a hurry. The philosophy is that we are in a race to cross that finish line and find a cure. It’s what has been driving me and everybody who has worked with us – a race to raise enough money to get there.
Compared to what you were told if somebody is diagnosed today with MS, what is the prognosis?
Well, the really exciting thing is when they’re diagnosed, especially when it is a young person, we helped develop medication that can give a much better quality of life and independence. Not all, but for most. There are amazing drugs that suppress your T cells, and we did the pilot studies for this medicine to figure out that when you have an auto-immune disease, your T cells start attacking each other and we wanted to figure out why and how we can stop it. There are two medicines now to do this. And it can help about 90% of people with relapsing or remitting MS. For those with chronic or primary progressive MS, it can be a different story. You might not have the same relief, but it’s a miracle that these drugs are there. It’s a miracle they exist.
Do you have any stories or examples of somebody that you heard about that made remarkable progress?
I hear stories quite often. People who were in a wheelchair, who had no level of independence, who couldn’t walk. And they started taking this and they got their independence and their confidence. And it’s really the most amazing thing. To me, that’s the greatest pleasure.
Does Race to Erase sponsor any other programs?
We constantly update and evolve. We have programs to bring in young doctors. So every year we have The Young Investigator Awards because I believe they become some of the great doctors. And we really want to find those people who are really outstanding, people who have great ideas and who start their career in MS research.
And you have a book coming out?
It’s called Just One More Day, and it really deals with addiction and grief. My son Jason Davis, had struggled with addiction off and on for 12 years. passed away at the beginning of the pandemic. It’s been the most devastating time in my life. So we started a charity, called Cure Addiction. We’re going to find a lot of different medications and different ways to treat addiction. I’m very passionate about doing this. It’s such a big problem. It’s now the leading cause of death in our country for people between the ages of 15 and 47. We’re looking to take the shame away from addiction and call it a real disease. There is something genetically predisposed in your body to become an addict. It doesn’t mean you’re a bad person. They need to be loved. They need to be embraced. They need to not be isolated and pushed aside. And it’s a disease that everybody has looked the other way for too long and not bothered doing significant research. So that’s got to change.