“ALS is not an incurable disease.  It is an underfunded disease.”  – Stan Appel, M.D.

Last year, my husband Rob gathered a huge team of people to participate in the Napa Valley Ride to Defeat ALS. The event was held in September in Yountville, California on a gorgeous day. And I was nervous. It’s sometimes hard for me to prepare myself to be around other people with ALS, people who are further progressed than I am. I was afraid that what was meant to be a day of fun and accomplishment was instead going to be wildly depressing.

I am happy to report that I was wrong. Seeing the faces of my friends and family, many of whom had flown across the country to be there, was uplifting and—even better—NORMAL. Some people walked 2 miles, others rode 12, 27, 64, and even 100 miles to raise money for ALS research and patient care. Our team, #Speed4Sarah, was the top fundraiser with nearly 100K raised.

This year, Rob, Scarlett and I will be in Lexington, Kentucky for a wedding on the day of the ride. Rob’s brother John passed away very suddenly last year, and Rob has the bittersweet honor of giving away our lovely niece Danielle. There is nowhere else I’d rather be that day than with family, celebrating the newlyweds, and remembering John and his irreplaceable role in our lives.

Though we can’t be there in person, we are still committed to supporting the ride. It’s been enlightening to look into the various ALS fundraising organizations to decide who we want to support and how. The good news is that there are so many research projects going on that it’s been hard to choose. That’s not a problem that ALS patients have faced in years past.

The Napa ride is organized by The ALS Association. There are many highly intelligent doctors and researchers who are funded by events like this one, and they are so encouraging about the progress that’s been made and the promise they see for future treatments and a cure. But a cure will take time. It’s frustrating to learn about how drug trials and approvals work when time is not on your side. It’s inspiring to know that there is more hope than ever before.

That’s why we keep going. It’s why I wake up in the morning and put a post on Facebook, when I previously thought Facebook was one of the more annoying things in my life. It’s why I tweet, blog, talk to researchers and other ALS patients, and explore clinical trials and alternate therapy ideas. I’m trying to find a way out of this, for myself and for countless others. At this moment, people are being diagnosed with ALS. Others are hearing for the first time that they might have it. And others are dying.

Sometimes I just want to get in bed and pretend none of it is happening. But that’s simply not an option. Eventually, there will be a cure, a vaccine, an end to this disease. For now we need to raise money and awareness, making people care enough to affect the change that I know is possible.

It doesn’t matter to me if we’re the top fundraising team this year (although I’m sure it matters to Rob, who is insanely delightfully competitive.) What matters is that we’re fighting every day to make ALS history. Please help us with our small part in this battle by donating to this year’s Napa Ride to Defeat ALS, or by riding or walking in your area.

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