Race to Erase MS founder Nancy Davis talks about how parenting with MS can be done, and why May is the month to wear orange.
I was a mom with three young children when I got the news.
An avid skier, I had been on the slopes in Aspen. There was an accident, and I wound up in a local hospital. Three weeks later, I began to experience numbness in the fingertips on my right hand. Then I lost feeling in the entire hand, then the other hand, and gradually in other parts of my body.
It was 1991. I was 33 years old, and I had just been diagnosed with multiple sclerosis.
A neurologist determined the ski accident had triggered what was already in my body from a young age, but had until then shown no symptoms. I was told I would never walk again and would be “lucky” to even operate a TV remote.
I was stunned and terrified, both for myself and, as an unimagined future unfolded before me, at the prospect of being an incapable mother. I couldn’t help but wonder if I would be able to participate in any of my children’s activities. In fact, I was terrified they would have to push me around in a wheelchair. What I did know was I needed to be honest with them as much as I could without scaring them, and over time I taught them more facts that were age-appropriate. Going from doctor to doctor, city to city, I kept hearing the same thing: MS was a hopeless disease with no known cause, therapies or cure.
But I was determined to fight.
I met medical teams that were all doing the same research, and I realized the pressing need to connect them to share information and unify their efforts. I wanted the doctors to constantly communicate and never duplicate their research, and this became the cornerstone of the Center Without Walls. I established an annual gala to fund these collaborative efforts.
Some 12 years after being diagnosed, I was able to have more children and gave birth to twin daughters. Thankfully, the MS is suppressed during pregnancy and I’m lucky to now have healthy 10-year-old girls.
As a mother with MS, still quite mobile despite the initial prognosis, raising five children has been a challenge. But it has also been, as they say, a teachable moment. Since running the Race to Erase MS Foundation has required much of my time, I’ve brought my work and home life together by involving my children in everything I do. They have come to meetings, provided input, helped plan initiatives and regularly solicited auction items for our annual gala. They love being part of this cause, not just because their mom has MS, but because they know there are so many others who suffer from the disease.
My youngest daughters have helped me learn to educate young people and use social media to reach them. They are incredibly insightful. With even the most buttoned-down businesses embracing “gamification” to better reach Millennials, they know that cause-driven foundations also need to make outreach fun.
There’s certainly no lack of fun – humor! song! celebrity repartee! – at our April fundraiser. We just held our 22nd annual Race to Erase MS gala, upping our donation base to more than $35 million raised to date. This segues into May and our “Orange You Happy to Erase MS” campaign. This month-long campaign was launched in 2008 to heighten awareness and raise funds for MS research. Orange is a vibrant color of hope that was chosen to represent multiple sclerosis. Throughout May, a growing list of partners designs unique orange products which are sold to benefit Race to Erase MS. Many are designed for young people, from fashion to beauty to books, helping educate and inspire the next generation.
My children have given my life deeper meaning, a greater sense of responsibility, and the drive to keep pushing. When I started the foundation more than two decades ago, there were no available drugs. Today, there are 11 FDA-approved drugs, with more coming through the pipeline. Modern research holds tremendous promise in not only diagnosing and treating MS, but in finding a cure. I’m proud to have been part of that progress. And I hope my journey can empower others to make choices, even ones they don’t believe they have. I have found my PIL (purpose in life), and believe this is more important to me than any pill a doctor can ever give me to improve my health.
Nancy Davis is founder of Race to Erase MS, and an L.A. mom of five. Learn more about the organization at www.erasems.org.