Ray Spooner, 1959 – 2016

A bright light in our community has been extinguished. Ray Spooner — beloved husband, father, grandfather, son, brother, nurse midwife and cyclist — died yesterday, August 8, 2016, of ALS.

Ray was diagnosed in 2014, just months after participating in the inaugural Ice Bucket Challenge, and in 2015 set off to cross an item off his bucket list: biking across the country. He chronicled both the bike trek and his journey with ALS on his blog, Ray’s Little Ride. In his final post, Ray wrote: “The only advice I would offer [to a person with ALS] would be the same advice I’d offer anyone. It may sound simplistic but it can change your life if you live by it. And that is if there is something that is important to you to do or say, do it. Do it now. That’s all. It’s been a hell of a ride.”

Steven M. Derks, MDA President and CEO, speaks for many when he says: “Our MDA family and the entire ALS community are mourning the loss of an exceptional human being and treasured friend. Ray Spooner came into our lives just one year ago after being diagnosed with ALS and charting a ’bike’ path forward to raise awareness and funds for ALS, while also checking off a bucket list item to cycle across the country. He shared his own ALS experience with love and brutal honesty, showcasing what it means to truly live unlimited. Our thoughts and prayers are with Rae and his family and friends at this enormously difficult time.”

Meet Ray


Some said he was crazy to bike across America after being diagnosed with ALS. Ray Spooner said “Watch me!”


UpworthyThe Spooners are a definite example of ‘relationship goals’ — and the power of love.

PeopleIllinois Man Who Took Ice Bucket Challenge Without Realizing He Had ALS Embarks on Ride of a Lifetime: ‘An Extreme Diagnosis Called for an Extreme Response’