Scott Carlson was working as a systems software engineer and training for a triathlon in 1997 when he felt an odd twinge in his right shoulder. His thumb and hand grew weak, then it became difficult for him to hold up his head. Doctors diagnosed him with amyotrophic lateral sclerosis (ALS), a progressive neurological disease which is also known as Lou Gehrig’s disease.
The Rhode Island man read up on ALS and learned some terrifying facts. He would no longer be able to ski or play the guitar. His body would soon be unable to eat, walk or breathe on its own. Worst of all, ALS is fatal and there is no cure. Although physicist Stephen Hawking is a notable exception, most people only live for two to five years after the symptoms first manifest.
As the disease ravaged his body, Carlson vowed to live life to the fullest. He married his girlfriend, Hillary J. Phipps, and sponsored athletic events to raise money to fight ALS. He also spoke at schools to raise awareness of the disease. He told students to set goals and to believe in themselves despite the setbacks they inevitably will face.
Carlson died on Dec. 2. He was 39.