So many people call me to tell me how they have gone from being in a wheelchair or not being able to live an independent life to then gaining their independence back. They have become active again and in some cases can walk again. Recently I meet a mom at one of the Race to Erase MS meetings at my home, and her life has significantly improved now she has access to medication we helped to develop (it received FDA approval two years ago). She can go everywhere with her children and be a full-time mom, travel and do all the things that make her life full.
I had the pleasure of interviewing Nancy Davis. Nancy founded Race to Erase MS in 1993, after she was diagnosed with Multiple Sclerosis, dedicating herself, and the organization, to the treatment and ultimate cure of the disease. All funds raised by the organization, through its iconic annual Race To Erase MS gala and year-round initiatives, support the “Center Without Walls” program, a unique collaboration of the world’s leading MS research scientists currently representing Harvard, Yale, Cedars Sinai, University of Southern California, Oregon Health Science University, UC San Francisco, Johns Hopkins, and UCLA. Since 1999, Race to Erase MS has raised over $47 million in contributions and funded MS research grants and programs totaling over $25 million. Davis also created the annual “Orange You Happy to Erase MS” campaign, which takes place for the entire month of May (MS Awareness Month) and adds yet another branch of fundraising for MS research. Throughout the month, a variety of orange products, many of which are specially created for this initiative, are sold to benefit the cause and elevate public awareness about MS.
Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?
I had worked on a diabetes charity with my mom when I was diagnosed with MS. After my diagnosis, I saw how hopeless this disease was with so much duplication of research from the best MS research centers in our country. I knew if these brilliant doctors shared research, it would avoid duplication and create a dream team so we would have a fighting chance at curing MS. I knew I had to start my charity Race to Erase MS to change the odds and turn this negative into a positive.
Can you share the most interesting story that happened to you since you began leading your company?
When I was hosting my first charity event in Aspen, I had a volunteer meeting the day before, and a young woman in a wheelchair came up to me with her mom saying they heard me on the radio the night before and were inspired to get help. She had been diagnosed at the same time I had been and had young children as I did as well. She had not gotten out of bed since her diagnosis and stopped taking care of her children and living her life. I realized then that I could help others. I helped her get medical help, and her life and her children’s lives were changed. I learned it only takes one story like that to give you the courage to fight for your dreams.
Can you describe how your organization is making a significant social impact?
We are working hard to find a cure for MS, and it’s exciting to see how the quality of so many people’s lives has dramatically improved. People diagnosed with MS now have hope that they can live a better quality of life. Every day it is becoming a reality that we will find a cure for MS.
Wow! Can you tell me a story about a particular individual who was impacted this cause?
So many people call me to tell me how they have gone from being in a wheelchair or not being able to live an independent life to then gaining their independence back. They have become active again and in some cases can walk again. Recently I meet a mom at one of the Race to Erase MS meetings at my home, and her life has significantly improved now she has access to medication we helped to develop (it received FDA approval two years ago). She can go everywhere with her children and be a full-time mom, travel and do all the things that make her life full.
Are there three things the community/society/politicians can do help you address the root of the problem you are trying to solve?
It’s important to state how many people in our country truly have MS as it affects close to two million Americans. Nowadays drugs exist to improve the quality of life when living with MS and unfortunately many people have to fight so hard to get access to them. Insurance companies should make it easier to cover patients with MS and allow them to be on drugs that their doctors feel they should be on. It is so unfair that certain people do not have access to these drugs that will improve their quality of life!
How do you define “Leadership”? Can you explain what you mean or give an example?
Ultimately leadership means to lead by example. You have to believe completely in your cause and have the passion to commit to doing everything you can to reach your goals. You have to be willing to change all the time and be open to listening to all suggestions by your team.
What are your “5 things I wish someone told me when I first started” and why? Please share a story or example for each.
1) How hard it would be
2) How everything written in stone means nothing
3) How you should look at research as a whole
4) That you need to make sure your research studies won’t be shelved after getting to phase two trials and phase three studies
5) Things will always change
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
If we truly want to find cures for the diseases that plague our world, I would have collaborative research for every disease and follow the Center Without Walls method to bring the best, brightest and most innovative doctors to work together as a team. They would always communicate and never duplicate research. Doctors should be able to find therapies and cures for all diseases quicker by taking out competition and encouraging collaboration.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“Whether you think you can or think you can’t, you are probably right.”
Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
I would love to meet Anne Wojcicki. I would like to discuss our medical research methods with her as she is a dreamer with a unique vision and is willing to jump outside of the standard research box. She created 23andMe and has such a large bank of genetic testing which would be amazing to use for MS as well as for studying the causes of addiction (which is a new charitable mission I have just started).
This was very meaningful, thank you so much!