Nancy Davis was diagnosed with multiple sclerosis at the age of 33 in 1991. After being told by her doctors that she would be “lucky” to operate a remote control on her TV, she realized she was too young and too busy to let the disease stop her life in its tracks. She was determined to devote her time, relationships and resources to finding a cure. Nancy’s hope, courage and strength continue to inspire her to maintain a vibrant quality of life despite this chronic disease, but most of all, she remains positive, continues to live her life to the fullest and is tireless in her efforts to find the cure for MS.
Multiple Sclerosis is an autoimmune disease that affects three times more women than men and the diagnosis of children with MS as young as two has increased. It often is diagnosed in women around the age of 30 when they are in the prime of their life.
In 1993, she founded the Race To Erase MS – an organization whose primary focus is to raise funds for the most cutting-edge, aggressive and promising research in an effort to find a cure for MS. Also in 1993, Nancy created the Race To Erase MS Gala event – an intimate ski getaway weekend in Aspen, Colorado – that raised over $1.3 million for the Foundation. Since its inception, the Race to Erase MS has grown into a spectacular celebrity gala benefit held annually. Over the years she has gained the support of many key individuals in the fashion and entertainment worlds. The annual Race to Erase MS gala event has raised over $50 million for multiple sclerosis research to date. When they first started, there was no known cause, no cure, no drugs on the market, and a true lack of hope. Today they are so excited that there is FDA approval on fifteen drugs with many more on the horizon. For the young person being diagnosed with MS today, there is so much hope.
Nancy, what inspired you to find a scientific cure for addiction?
My son, Jason Davis, battled addiction on-and-off for 12 years, and unfortunately passed away at the beginning of COVID-19.
Jason’s dream was to start Cure Addiction Now (CAN) and develop new treatments and therapies to help stop addiction cravings and find easier and more equitable ways to detox for everyone. Addiction is the leading cause of death for people under the age of 50 in our country, and that nobody had really put any significant money into the research of the science of addiction and how it affects the mind for at least 20 years. I decided it was time that change had to be made. Around 7% of people have had great success with AA, but there is an enormous amount of people still struggling with multiple addictions, and need to find other ways of getting and staying sober.
How many people are affected by substance abuse and how can Cure Addiction prevent further addictions from occurring?
Millions and millions have been affected by substance use disorder (SUD), whether it’s personal or through a family or friend. And, the number is continuing to grow everyday as the leading cause of death in the US. Before COVID-19, one person died of an opioid overdose every 11 minutes. Now (post COVID-19), there is an opioid overdose every 90 seconds. And the numbers are rising.
It is also so important to bring awareness, education, and research into the drug fentanyl. Fentanyl has become responsible for over 70% of today’s drug overdoses, as over 95% of every drug bought outside of a drug store is laced with the deadly potent drug.
Can science replace substance abuse rehab? There are a lot of residential rehabs around the world that try to help individuals get clean. Do you feel these rehabs are doing everything possible to cure addiction?
There are some amazing residential rehabs in our country. Unfortunately, they are not all equally staffed with well-trained professionals. I believe that rehabs need more tools to deal with different types of addictions – it’s not always a one-size fits all. The battle with substance abuse is a tough one because it’s a brain disease. We’re currently working on getting new drugs and treatments, which would provide more tools to the centers and help patients stay sober after leaving these facilities.
What is the ultimate goal of Cure Addiction? Do you believe you can end addiction medically and prevent sufferers from attending expensive in-patient rehabs?
The ultimate goal of Cured Addiction Now or CAN is to help anyone and everyone struggling with substance use disorder. Everyone has the right to the best quality of healthcare. While my son was battling addiction, he really wanted to create a foundation that was accessible to everyone because the reality is, most people can’t afford rehab, have limited access to medicine, and don’t have insurance. Even when you have good insurance, it rarely covers the high cost of rehab. So, it was really important to him that we find new ways to detox in an affordable way that can be created and distributed. We’ve been working hard, and will still continue to work with our research team, who specialize in addiction.
Cure Addiction is just one of the organizations you founded. Nancy, you started Race to Erase MS in 1993 after being diagnosed with the disease. Tell us about Race to Erase MS and your experience operating the organization.
I started Race to Erase MS almost 30 years ago. The 30th anniversary will be on June 2nd of 2023.
My experience with Race to Erase MS has been so inspiring. When I started the foundation and was diagnosed with MS, the future was bleak that we would ever find any medications or therapies to help stop MS. Everyone doubted our ability to find medications, garner support, raise funds, and it’s been so exciting what has happened since then. I was told to go home and go to bed, and that I would never walk again. Today, all that has completely changed due to the 24 different drugs used to now treat MS. We’ve done pilot studies for in-depth scientific research to help create dozens of new medications that can help treat MS. Additionally, we are always encouraging new and young doctors to join forces with us, with our Young Investing Awards as new ideas are something we are always looking for.
You were diagnosed with MS after suffering an ACL injury while skiing. Can you tell us about the moment you learned you had MS? What challenges does an entrepreneur and philanthropist have when living with MS?
I woke up three weeks after my ski accident, suffering from an ACL injury. It was soon after that I began experiencing MS symptoms – first I lost the feeling in my right fingers, then the left, and then my eyes – it was this bizarre, numbing feeling. I thought that maybe it was due to the brace on my knee cutting the circulation off, but I soon sought a doctor who diagnosed me almost immediately. I was lucky enough to have the disease caught, as most people don’t have that experience. But, there was no cure, no drugs on the market, and not that much help, so it was a very frustrating time.
As an entrepreneur and philanthropist living with MS, one of the challenges I faced early on was the overarching fear of the disease and the “what-if” questions. What if I can’t walk? What if I can’t take care of my kids?
How has MS medicine and treatment changed since the early 1990s? Can people live relatively normal lives nowadays?
The treatment for MS has changed more than 100% because it started with no cure at all and no hope. But today, there has been an incredible evolution with 24 FDA approved medicines, and #15 and #2 specifically have changed the course of this disease. Now, many people with RRMs can live relatively normal lives – it’s really exciting to see where we are today from where we started, and to know that there is research ongoing for more important drugs and therapies in the future. We however have a long way to go to help people with chronic and primary progressive MS.
Nancy, tell us about the Race to Erase MS gala and the celebrities that have come together to help raise funds for the organization.
We have been so lucky to be embraced and supported every year by the generous Hollywood community. Race to Erase MS originally started out as a pro-celebrity ski weekend in Aspen. Over the years we’ve had the gala in Las Vegas as well, but we’ve enjoyed the support from our Hollywood community. Every year, we’ve had an amazing turnout of support from celebrities and well-known figures, from the fashion world of Tommy Hilfiger, Alice + Olivia, Michael Bolton, Kenny G., The Jackson family, The Hilton Family, Kardashian family, and Valentino (the designer), among others. Ever since, it has grown with amazing entertainers like Elton John, The Eagles, Earth Wind and Fire, Andy Grammar, KISS, and Flo Rida, amongst many others.
Race to Erase MS has raised around $60 million since it was founded three decades ago. How significant has the money been to research into the disease?
We couldn’t have done the research without the incredible donors that have truly given from their heart. We are so grateful to the generous group of people who support us year after year. It wouldn’t have been possible without each and every one of them.
Nancy, you are known for philanthropy work, but you are also an entrepreneur. You are the owner and designer of jewelry company Peace and Love. How do you find the time to run a business and two foundations?
I love to design and find it such a fun and creative outlet. After 9/11, I was working with Tommy Hilfiger, and we created this idea that “peace and love” would be the theme for Race to Erase MS for that year. This was a design I had always drawn since I was young and loved the beautiful sentiment of intertwining peace and love into beautiful and meaningful jewelry. I created my first Peace and Love jewelry designs that many celebrities wore that year, which really took off. Before I knew it, Saks 5th Avenue picked up my line, national television shows were featuring my product, and the designs were available in retail stores all over the country. A portion of all sales are to benefit the organization.
How is a day in your life?
A day in my life is very full – I wake up early and go to bed late. Every morning, I thank god that I am alive, have my family, and am able to do what I do each day. I have twin daughters, and I have extreme honor in being their mother. I’m so grateful. I work on both Race to Erase MS and Cure Addition Now daily, and feel so grateful that we are really saving lives. I have many meetings and Zoom calls. I always miss my son, so I take time everyday to look at the sunsets and visit with him in my own special way. I hope he’s proud of this charity that was so important to him.
What is something most people don’t know about you?
One thing that most people don’t know about me is that I’m currently working on my second book, “Just One More Day”. The book deals with grief, and is based on my son’s screenplay he wrote when he was 12-years-old. Jason had started working with Chris Farley on “Beverly Hills Ninja”. When Chris passed away, Jason was devastated and dealt with his grief through writing. After Jason passed away, I found his amazing screenplay, read it again, and thought, “what would I do if I could have my son back for 24 hours? For just one more day”? That would be my dream. And I began writing.
The journey has been extremely healing and I hope it helps to deal with the terrible disease called grief. I’m hoping to release “Just One More Day” to readers in about six months.
Choose two of your favorite quotes and write them here:
“Whether you think you can, or you think you can’t, you’re probably right”
“Lean on me / When you’re not strong / And I’ll be your friend / I’ll help you carry on… / For it won’t be long / Till I’m gonna need / somebody to lean on”
If you had the power to change just one thing in the world, what would it be?
If I had the power to change one thing in this world, it would be to bring my son Jason Davis back. Following that, it would be having the power to save lives in the world of both addiction and MS.
Images credit: Grace Fries