If you asked me years ago what my early 40s would be like, I never would’ve thought I’d be severely disabled and spending my days working as the co-founder of Crush MS, a nonprofit network of wineries dedicated to eliminating multiple sclerosis (MS), the disease that changed my life forever. How did I get here?
In 2002, I was 27 and living in San Francisco. One morning, I walked outside my apartment on a typical foggy day. The fog was nothing new, but the fogginess in my right eye was. At first, I ignored it, but after a week of drastically blurred vision, I went to an optometrist. He suggested I see a neurologist, since I was showing early signs of MS. Soon after, I met with a neurologist who ordered an MRI. The results were definitive, showing multiple lesions on my brain.
After my diagnosis, I learned MS is an autoimmune disease in which the body attacks its own nervous system, causing an interruption in nerve signals. It is often diagnosed in the prime of life (20s-40s), and over time, will lead to some level of disability in most people. Living with MS means living with a mix of physical, cognitive and emotional symptoms that vary from person to person and can change over time.
Because of my MS, I have dealt with symptoms ranging from numbness, tingling and severe nerve pain to massive fatigue and complete left side paralysis. The disease has made my left leg unusable, so I need a wheelchair to get around. It caused me to lose my ability to play piano, and because of that – combined with fatigue – I had to give up my lifelong dream of teaching music. The one predictable thing about MS is its unpredictability.
Over the years, living with this disease compelled me to do something to help others. As I was trying to figure this out, I met a woman in Napa named Julie Hare, who also has MS. She and her husband had created Counter Punch Wines to fight back against the effects of MS. Sharing my desire to eliminate MS, they agreed to collaborate with my family winery, Reid Family Vineyards, on a project called Crush MS.
The idea was, and still is, to bring many wineries together to raise funds for critical research into the cause of, and to find a cure for, MS. In the summer of 2014, Crush MS held our first wine tasting fundraiser, an event that was very successful. Attendees were invited to sip and savor wines from more than 20 wineries, enjoy delicious grilled bites and bid on auction items, all for a great cause. We have held our multi-winery fundraiser each year since. With tremendous support from attendees, volunteers and supporters, Crush MS has been able to donate nearly $300,000 to research at Stanford University and to programs that help people live well with MS. This year, we are celebrating the 5th Annual Crush MS Summer Celebration and Symposium on Saturday, July 28 at Reid Family Vineyards.
While Crush MS looks to the future of the disease, I’m also focused on helping people in the community deal with its everyday challenges. While I’m lucky to have supportive family and friends, I’ve realized the importance of asking for help and relying on community resources, especially if I’m having a bad day with my MS.
For example, there is a new website called GatherMS.com that helps collect existing local and national services that may be useful for people living with MS and even our care partners. Created by Genentech, the website features community organizations like Crush MS where people can get involved to help others, and a variety of other services like transportation assistance, grocery delivery, retirement planning and more to help with the unpredictability of the disease.
Right now, there are approximately 84,000 people in Northern California living with MS and more than 400,000 people in the U.S., but with organizations like Crush MS and resources like GatherMS.com, I have faith that the Napa Valley community can help beat MS.