As you may know, our dad, Kevin, was diagnosed with this horrific disease on July 18, 2024.  Since then, the disease has taken A LOT away from him, but not his spirit.  We are extremely fortunate to still have him with us and for him to be able to speak without assistance. 

However, now, nearly 2 years later, he has lost the use of all of his limbs, except for slight movement in his non-dominant hand to be able to control his wheelchair.  He has a PEG tube and uses it for at least 2 out of his 3 meals because swallowing has become much more difficult and he chokes every time he eats.  He uses the ventilator 90% of the time to help him breathe, because his lungs do not have the power to do it on their own.  He needs the use of either a Hoyer Lift or a Ceiling Lift to be taken in and out of bed.  He can no longer even roll over on his own, so in the middle of the night, someone needs to wake up every few hours to turn him on his side.  He can’t be on his side for too long though, because without any muscle holding the joints together, his joints collapse on him causing immense pain.  That’s one of things few people don’t realize about this horrific disease that takes away your movement, it doesn’t take away sensations.  He feels all the pain, he feels hot, he feels cold, he gets itches that he cannot scratch on his own.

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone regardless of age, gender, nationality, or ethnicity, although it is primarily an adult-onset disease. Currently there is no known cause or cure OR real treatment!  It is 100% fatal and 1000% torture. 

Please consider supporting our efforts to raise awareness and funds to support research and provide services to those in need by donating through my fundraising page.

Please feel free to send this page to any friend or family member who might be interested in donating!

Please also join us on September 19, 2026 for the walk! Kevin would be so happy to see everyone that supports him…and in true Kevin fashion, he intends on having a picnic afterwards so we can all be together!

With love, 

Kevin, Arlene, Nicole, Steven and Matthew 

(and Goose too)