More than 1,200 participants, volunteers, and members of the community came together for a family-friendly morning of celebration, exercise, education, awareness, music, food, and family fun as the ALS Association Golden West Chapter hosted the 14th annual Napa Valley Ride to Defeat ALS (NapaValleyRide.org) on Sept. 22 at the California Veterans Home in Yountville.
This annual fall event generates an outpouring of support for those affected by the disease in California. Together, the community raised more than $900,000 towards a $1,000,000 goal to fund the mission priorities of the Golden West Chapter in care services, public policy, and research.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a fatal, neurodegenerative disease that attacks nerve cells in the brain and spinal cord. People with ALS lose their ability to move, speak, swallow and eventually the ability to breathe, while all five senses continue to function normally. ALS can strike anyone, at any time. It knows no racial, ethnic, or socioeconomic boundaries, though military veterans are at twice the risk of the general population. The average life expectancy of a person with ALS is two to five years from diagnosis. At this time, there is no known cure.
Among the participants at Saturday’s event was Rev. Dr. Deana Reed, of Napa, who was diagnosed with ALS in 2014.
“Our lives turned on its axis as my spouse Jan and I heard the words ‘Deana, you have ALS,’” she said. “The news was a shock to say the least. Our days were at first filled with fear, questions, and tears as we moved toward the opening of a new chapter for us.
“In the four years that have followed, we have been grateful for the slow progression of the disease and the outpouring of support from all around our ever widening circle of friends, family, colleagues, and acquaintances here in our beautiful Napa Valley. Their presence reminds me of the hope that surrounds life.
“The team of multidisciplinary ALS care professionals that we are working with are an amazing group of caring humans, filling us with hope and helping us know that we are not alone and will not be alone. The support that we received through the efforts of The ALS Association Golden West Chapter, and their mission to find effective treatments and cures for ALS, has also been very important to us.
“My life as the minister of Covenant Presbyterian Church in Napa ended two years ago, as ALS has targeted my voice and affected the quality of my speech. It is such a strange thing for me, as a pastor, to be losing the instrument that is so crucial in communicating God’s grace and love while leading a congregation.
“Today, I am finding new ways to do and be, and am always interested in how we speak beyond our voice, which we so often take for granted. Oh, how I miss singing though.”