I am Lori Larson Heller
a family member of someone we've lost to ALS
The ALS community of patients, caregivers, families and friends is a beautiful group working together to find a cure.
My husband, Jim, who was also my best friend and soulmate, was diagnosed with ALS on Sept. 6, 2018. Imagine the devastation when you receive the news that not only do you have this terrible disease, but there is nothing they can do for you. I immediately stopped working and became the full-time caregiver to my husband, an act of love I would not trade for the world. 9/6/18 was the worst day of our lives, until it wasn’t. Then 5/16/20 became the worst day, the day Jim lost the fight.
He was a big fan of the Minnesota Twins, and it became a highlight for him to watch all the games once relegated to a wheelchair. Jim was always a fan of Lou Gehrig, especially after learning the fact that they were both Phi Delta Theta’s (Jim at the University of CO – Boulder), and his fraternity connections became lifelong friends. It was ironic that Jim was then struck with ALS/Lou Gehrig’s Disease. Jim felt great pride in stealing Lou’s line from his infamous speech by ending his marriage vows to me with “I feel like the luckiest man alive.”
I vowed to him that I would not only raise funds to research and find treatments for this disease, but that I would also volunteer as an ALS advocate to work tirelessly until we find the day that others do not have to walk the gut-wrenching path that Jim did. The ALS community of patients, caregivers, families and friends is a beautiful group working together to find a cure. Join us. #fight #endALS