A Tribute to Matt Chaney, Our Hero

It is with a heavy heart that we share the sad news that Matt Chaney, Chapter Advisory Trustee and dear friend to many, died on November 11, 2022, after a twenty-two-year battle with ALS.

It is an understatement to say that Matt Chaney was a renaissance man, who would describe himself as a people person and problem solver. He loved music, and would often say that his skills were good enough to get others to join in, whether at a campfire, backyard barbecue, or any other kind of gathering. As a dad of two boys, he would joke that he spent a few years touring a preschool/kindergarten circuit, and did a solid impersonation of Bob Dylan singing “This Old Man.”

Matt shared that it was one night while playing guitar at a friend’s party in March 2000, that he first noticed he was unable to grip his guitar pick (and could not blame the tequila). This weakness in his hand muscles proved to be the first symptom, and Matt received a definitive diagnosis of ALS in 2002, when his sons were just nine and six years old.

Matt instinctively faced this new battle head-on, with determination, courage, leadership, unwavering positivity, and humor. Activism was second-nature to him, and Matt once said, “I devote myself to the causes I care about, because helping others helps me.”

Matt and his wife of 34 years, Liz, committed themselves to helping others in the ALS community. They were foundational supporters of the Golden West Chapter, beginning their involvement in 2002 by participating in all seven Northern California Walk to Defeat ALS events, the Drive for a Cure ProAM Golf Tournament, and every Napa Valley Ride to Defeat ALS and Walk since its inception. Matt served as a Chapter Board Member from 2012- 2016 and then began his service as an Advisory Trustee.

An incredible athlete, a curious adventurer, and a master at jerry-rigging whatever needed modification in his world, Matt parlayed those qualities into his approach to living with ALS. His inquisitive nature and internal strength fueled his efforts to live his life to the fullest, everyday, even when facing the many challenges of the disease. If his physical world wasn’t working for him, he would adapt and adjust.

Over the years, many marveled at Matt’s unique inventions, like his bocce “boot” (which also enabled his throwing of the first pitch for several MLB games), his golf putting shoe, as well as the countless modifications that were made to his beloved recumbent bicycle, which allowed him to ride thousands of miles. When Matt lost the ability to speak or write with his hands, he used his feet and signed his emails, “Typed by toe on my iPad.”

Given his diverse interests, he dedicated himself to many local and national ALS awareness efforts like Major League Baseball’s “4ALS” initiative with the San Francisco Giants and Oakland A’s; the “Be A Hero at Tax Time” ALS awareness campaign for the California Tax Check off, which raised over $600,000 for ALS research; as well as many community efforts including the Lafayette Little League “Runs for ALS” program.

Matt was a longtime volunteer for the Napa Valley Ride to Defeat ALS and Walk planning committee, and served as co-chair for many years and was an Honorary Co-Chair every year after. He and his team, Hot Dawg, rode thousands of miles and raised more than $500,000 in the 18 years they have participated in the Napa Valley Ride and Walk. Matt never shied away from a challenge, whether it was helping to create a million dollar event for the first time in Golden West Chapter history, or coming up with new and interesting ways to engage participants to raise more. Matt, his wife Liz, and his entire extended family and circle of support, were always first to step up and do whatever they could for this community.

Matt was always willing to share his story to raise ALS awareness and support. In 2012, he took part in one of our first Chapter public service announcements, Matt Chaney is living with ALS, which has been viewed over 100,000 times on television, social media, and even at major league baseball events over the years.

He also participated in more than 20 news interviews and articles, including segments for ABC, KQED, and Comcast Newsmakers.

Matt’s true calling was as a connector who inspired others to get involved and make a difference. Over the years, more than 40 different ALS Ice Bucket Challenges were taken in his honor. He would often share that participating in Chapter events and finding ways to make the world a better place, one person at a time, was rewarding beyond measure.

In 2016, the Golden West Chapter presented Matt with the Essey Spirit Award for his determination and action in the areas of public policy, fundraising, and raising awareness while living with ALS.

Through his many efforts over the course of more than two decades, Matt has cumulatively raised or donated more than $1 Million dollars in support of the Golden West Chapter’s mission priorities related to care services, ALS research, and advocacy.

But Matt would say that his greatest work in life was as a father, son, brother, friend, and husband. His family and friends knew that Rule #1 with Matt was always “No Whining.” He was the guy who insisted that there was a beer handicap in croquet as well as a libation penalty for complaining. He never wanted pity – he felt that was too passive and not his style. It has been said that, while you were wallowing in your sorrows, Matt would be busy beating you in bocce … again. And Matt knew how to have fun!

But along with his jovial nature, Matt was a well-reasoned, critical-thinker who could voice his perspectives and gain wide support for his views. He always encouraged others to strive to be their best selves, whether it was as a little league coach or as an ALS advocate.  In the fall of 2022, he wanted to help motivate others in the ALS community who were participating in the Chapter’s upcoming Community Events by sharing his powerful story, one last time.

There are so many reasons why Matt Chaney was an inspiration to all of us. In September 2022, his nephew, Keith Johnson, just 17 years old, spoke about the profound impact that Matt had on his life at the Napa Valley Ride and Walk Start Line, which encapsulated many of Matt’s remarkable qualities.

Matt was a tremendous human being who contributed so greatly to everyone affiliated with the Golden West Chapter, whether they knew Matt or not, and that will continue to be the case long into the future. We deeply appreciate his insights as a powerful spokesperson for our mission, his tenacity as he lived with ALS, and the personal gift of his time and many talents in service to our ALS community. You can read more from Matt and make a gift in his memory in support of the mission of the Golden West Chapter.

Our thoughts are with Liz, Brian, Dylan, and Matt’s many loved ones and friends at this time. The Golden West Chapter will be forever grateful to the entire Chaney family for everything they have done and continue to do for those impacted by ALS. In honor of Matt and the nearly 2000 people living with ALS that we serve, we will never give up our efforts to ensure that no one is alone when facing this devastating disease and to advance the search for effective treatments and cures. It is only together that we will defeat ALS.