Temperatures in Death Valley, the vast swath of desert straddling California and Nevada, regularly exceed 100 degrees during spring and summer — not the kind of weather that invites semi-strenuous physical activity like bicycling. But for 60-year-old Jaime Lafita, who recently completed a nine-day, 400-mile ride across the area, the imposing climate was part of the draw.
Lafita was diagnosed with ALS in 2016. Three years later, he started a nonprofit called DalecandELA in his native Spain, a name that roughly translates to “rock on” or “ride on,” to promote awareness of the neurodegenerative disease. Through sponsored bike rides and other events, the organization has raised and donated over $450,000 for research and to individuals living with the condition.
The location of this year’s ride had a special meaning: It represents the notorious wasteland between lab research and drug development, a stage in which many biomedical projects fade away due to lack of funds.
“Death Valley clicked on my mind the moment I heard a researcher mention the term ‘valley of death’ as the hazard research projects find when trying to become a drug,” Lafita told Nice News in an email, “So the metaphoric challenge was evident, and the power of Death Valley, the iconic name, and the extreme nature of the place gathered all the ingredients to represent a challenge to draw awareness.”
And if any disease could use more awareness it’s ALS. Because it affects nerve cells in the brain and spinal cord, those who have it gradually lose their ability to walk, talk, and eventually, breathe. The average life expectancy for the fatal condition is around two to five years, though many people live much longer. There’s no known cause at present, and care can cost around $200,000 a year.
Lafita is determined to continue making a difference for as long as he can. Though no one would fault him if he chose to take it easy, the father of three is clearly someone for whom adversity acts as fuel — laying low is not his M.O.
“I’ve committed myself to do something to end ALS, as much as I’m able, even if it’s a drop in the ocean,” he explained. “The easiest thing is to stay at home watching TV, but I would miss such a wonderful, intense, tough but beautiful once-in-a-lifetime experience, and with a purpose. The purpose of fighting ALS and showing others that life can be savored in spite of its setbacks.”
Lafita trained for months to prepare for the grueling ride, which he undertook on a tandem bicycle with a partner. His group started with 12 members when they set off from Baker, California, on April 9, but by the time they’d arrived at their final stop, Yosemite, on April 17, they’d picked up 18 more. Nine days cycling under the desert sun may not seem like the most pleasant experience, but to Lafita, the positives far outweighed the obstacles.
“The main highlight has been the breathtaking landscapes we’ve cycled across: its dimensions, its remoteness, its overwhelming mercilessness and beauty at the same time,” he shared. “The people we’ve met along the way is also a highlight. Welcoming, supportive, and friendly; every time we told our story and our purpose, everyone has been so nice.”
It’s that kind of encouragement that means the most to Lafita, and inspires him to keep fighting for the cause.
“The messages of support we get from people living with ALS and their loved ones, from researchers, caregivers, medics,” he said. “And also from people who maybe are not affected by ALS, but find in what we try to transmit a way to fight against their own daily problems.”
Donate to DaleCandELA here.
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