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Kevin Heller Receives The ALS Association’s Hero Award

Kevin Heller (1)

We are honored to announce that the ALS Network’s Kevin Heller, Team Captain of #GiveEmHeller of the Napa Valley Ride and Walk to Cure ALS, was selected to receive one of the four National ALS Association Hero Awards. The ALS Association established the annual Hero Award to recognize people living with, or who have lived with ALS, who have made an indelible impact in the fight against ALS. It is the highest honor given by The ALS Association and its 39 Chapters. We are so proud that Kevin and his family were recognized with this prestigious award.

The Hero Awards were presented at the 2021 Leadership Conference on February 25. Please watch the special awards ceremony and learn more about Kevin by reading our nomination letter below:

Since 2019, Kevin Heller — a West Point graduate and U.S. Army veteran who was diagnosed with ALS at the age of 58 — and his team #GiveEmHeller, put their hearts and souls into the nation’s top-grossing ALS fundraiser, the Napa Valley Ride and Walk to Cure ALS. The gold standard of peer-to-peer fundraising, Kevin and his family enlisted hundreds of friends, family, colleagues, neighbors, partners, and followers from New York, New Jersey, Connecticut, Chicago, North Carolina and throughout the world of aquatics and “Peloton Nation” to learn more and do more to improve the lives of people impacted by ALS. The result has been countless social media shares and posts by his supporters and media coverage, along with over 1,970 donations, raising more than $365,000 to date to benefit the mission of The ALS Association (each year raising record amounts as a team for any event in the chapter’s history).  A strong example of Kevin’s leadership can be seen in his moving speech at the 2019 Napa Valley Ride start line.

As Kevin and his family were adapting to his diagnosis, Kevin’s company, Looker, was being acquired by Google. In the midst of this difficult time, Kevin shared his ALS diagnosis and fundraising efforts with his career connections in Silicon Valley, resulting in a sizable Looker sponsorship and Google employee participation, leading the Napa Valley Ride to its greatest fundraising year ever. Even while his disease rapidly progressed, Kevin attended and contributed to regular meetings as a valued member of the esteemed Ride Committee. In 2020, the ALS Network and the Committee awarded Kevin with its inaugural Napa Valley Ride and Walk to Cure ALS Elevation Award for his tireless efforts to elevate this cause and those around him to new heights (award presentation and acceptance speech starting at 19:35). In partnership with a volunteer, his team produced this video showcasing their experience on “Ride Day.”

Kevin also participated as a trailblazing ALS advocate with Project Euphonia, a Google research artificial intelligence initiative focused on improving speech recognition technology to help people with atypical speech be better understood. Kevin worked tirelessly with their team, who also helped to create a computer-generated speech model for him. “They offered to create a voice for me using the [voice banked] recordings I already had,” he shared. “I was able to use my ‘voice’ at a golf event in Phoenix (speech starting at 9:45, click here to view), to share my story with everyone. It was the first time the tool had been used publicly.”

That “golf event” was a special ALS awareness and fundraising event hosted and attended by many Major League Baseball players and managers, where Kevin was also joined by Pete Frates’ father, John. The story was featured in an extended segment by NBC Sports Bay Area & California. Inspired by his passion for baseball, Kevin became an active member on the ad hoc committee advocating for a Lou Gehrig Appreciation Day with Major League Baseball. This collaboration of families facing ALS, baseball players, coaches, executives, and ALS organizations (including The ALS Association), sought to increase ALS awareness and support nationwide. In October 2020, on The ALS Association blog, it was announced that all 30 teams endorsed the vision of a League-wide Lou Gehrig Day.

In August 2019, Kevin and Lesley joined their son, Michael, and the Menlo-Atherton High School’s varsity water polo team in taking the ALS Ice Bucket Challenge.  Their daughter, Lauren, also organized an Ice Bucket Challenge with the California Lutheran University volleyball team to inspire others to raise more awareness and money for the cause. Lauren has taken her support of the ALS community even further by serving as an intern for the Golden West Chapter and on the SoCal Ride Committee. For ALS Awareness Month in 2020, she created a unique way for people to show their support through a special template for Instagram Stories and shared her story as a part of the annual ALS Youth Action Day. In 2020, Kevin’s story was featured in a special Spotlight article to celebrate Father’s Day and Global ALS/MND Awareness Day.

Sadly, Kevin’s journey with ALS ended on January 5, 2021 – just two days before submission of his nomination for the Hero Award. He remains a rare leader who defines what a true “Hero” is to all of us. With strength and courage, he selflessly raised significant awareness and funds to benefit the entire ALS community. Even though he lost his ability to speak, he raised his voice to ensure improved access to care and to accelerate the search for treatments and cures for ALS, for those living with the disease today and those who will be diagnosed tomorrow. The ALS community will continue to #GiveEmHeller for years to come.

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