News & Stories
Celebrating Collaboration: the 2024 Death Valley Ride to Cure ALS
On April 9, Jaime Lafita, a native of Bilbao, Spain, who has been living with amyotrophic lateral sclerosis (ALS) since 2016, started his journey of the Death Valley Ride to Cure ALS. Jaime, along with his many supporters took part in the nine-day, 400-mile cycling journey on his tandem bicycle across Death Valley in an effort to raise critically needed funds and awareness of the disease. Lafita, the founder of the DalecandELA Foundation, collaborated with the ALS Network (formerly the ALS Association Golden West Chapter) for this event to raise funds necessary to end ALS.
“When you are diagnosed with ALS you enter the valley of death, because you know that there is no treatment or cure. Our challenge is to show that reducing this valley saves lives, that there is no time to lose and that we can turn it into the valley of hope,” highlighted Lafita.
DalecandELA, which translates to “Ride On ALS,” was founded by Lafita in 2019 to raise awareness of the disease and source funds for research and people living with ALS. Over the last four years, the Foundation has raised over $450,000 and has been recognized by the Spanish Society of Neurology and the European Conference on Rare Diseases. In 2021, Lafita completed a 600-mile bike trek from Getxo, Spain, to Brussels, Belgium, where he was welcomed by the President of the European Parliament on World ALS Day on June 21, which was the focus of the documentary, Tandem.
“ALS is not a disease without a cure. It is a disease without funds” said Lafita. “Without funds, we are anchored in an administrative ‘death valley’— the place where scientific ideas that run out of resources perish.”
As one of the 4,000 people affected by ALS in Spain and with numerous fundraising and awareness campaigns completed to date, including a Bilbao-Brussels bike trek in 2021, Lafita is carrying this challenge out as possibly his final journey, but in an incredible flourish, and with one main objective: To encourage approval of Spanish legislation supporting funding for research and support to those living with ALS. Through the “ALS Law Now” movement, Lafita and his association are working to obtain the definitive approval of a Spanish law that has been paralyzed in Congress since 2022.
“We’re honored to support Jaime in this incredible international journey, and we share his passion for raising awareness and funds for critically important care services, research, and advocacy efforts,” said Sheri Strahl, MPH, MBA, president and CEO of the ALS Network. “His resolve mirrors that of those collaborating across the ALS community to end ALS, together.”
After months of careful planning, training, and preparation, and all under the close eye and supervision of his accompanying physician, Lafita started his journey in Bilbao, where he and family and DalecandELA Foundation team flew to Los Angeles, California in preparation for the Death Valley Ride to Cure ALS. The days following, Lafita, his family, and his companions biked through California, crossing through Baker, Tecopa, Sunset Camp, Mesquite Campground, Eureka Dunes, Brown’s Town, Mammoth Lakes, Lake Tahoe Campsite, Mariposa, and finally concluded their ride at Yosemite National Park.
Among Jaime and DalecandELA, IX Cells Biotech, and others from as far away as China also joined as Team AskHelpU_MarshALS in the Death Valley Ride. Team AskHelpU_MarshALS was inspired by Mr. Cai Lei, who was diagnosed with ALS in 2019. Mr. Cai Lei has established the world’s largest patient-centered 360-degree life cycle ALS scientific research data platform, which linked more than 15,000 patients. He initiated body donation and built China’s first pathological research sample bank. He collaborated with the BGI Group and the Supercomputing Center at the Chinese Academy of Sciences to build and analyze the large-scale gene libraries for ALS patients, leading to new discoveries in the study of genetic causes. Mr. Cai Lei accelerated preclinical and clinical trials through data systems and collaboration with various stakeholders. He has sponsored and directly promoted over 100 pipelines for drugs and treatments for ALS.
“With this ride, I joined so many others in striving for a better end to the ALS journey, with the research funding needed to find the cure we all desire.”
– Jaime Lafita
On the second day of the Death Valley Ride, renowned ALS scientist Don Cleveland, PhD of UC San Diego welcomed Jaime Lafita, his family, and loved ones. Dr. Cleveland spoke about ALS research and his appreciation for their efforts to raise global ALS awareness and funding.
The day after the event on Thursday, April 18, participants of the Death Valley Ride visited Stanford University to meet with ALS researchers including Barber ALS Research Award Winner, Caiwei Guo, PhD. Others joined virtually on Zoom including Dr. Aaron D. Gitler, 2019 Sheila Essey Award recipient. Dr. Gitler discussed the exciting progress that has been made in ALS research. In addition, Jaime and his son shared their experiences and the importance of raising ALS awareness and support through collaboration between ALS researchers globally.
Death Valley Ride participants also went to Cedar-Sinai Medical Center the following day on Friday, April 19, and met with Dr. Clive Svendsen, Executive Director, Cedars-Sinai Regenerative Medicine Institute and Chair of the California ALS Research Network.
The ALS Network is grateful to Jaime Lafita, his family, DalecandELA, and everyone who participated in the 2024 Death Valley Ride to Cure ALS for their dedication to our mission as we work together to drive the discovery of prevention strategies, treatments, and cures for ALS; provide access to quality care and connection; and promote initiatives to improve health outcomes.
To make a gift in support, please visit DeathValleyRide.org. It is only together that we will end ALS.
See more videos and photos from the Death Valley Ride to Cure ALS below.
