I was diagnosed with ALS in May of 2023 after 18 months of neuro and muscular health issues. Following my appointment at Barnes Hospital in St.Louis, Darrell and I went out to great Italian dinner on The Hill.  Over dinner and bottle of wine, we laughed and cried. As we finished, Darrell said, “Mary, ALS did not win today.”

I had always had a fairly active life style of hiking, skiing, and running but within a couple months of the diagnosis, I lost the ability to move my arms and legs.

Over the last several months, we have been determined to find love and joy in our life everyday. We have enjoyed time with family, going out with friends, and staying active in our faith community. Although we are determined to not ALS take the joy from our lives, the truth is, there is no cure for ALS and it is a fatal disease. 

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, and presently there is no known cause or cure.

That’s why I’m walking. To change the statistics. To bring help and hope to those living with the disease. To ensure that no one ever hears the words: “You Have ALS” again. 

The past two years have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families.

But, we can’t stop now. The key to a cure begins with you. 

Please consider joining me or making a donation. With your help, we will be able to make a difference in the lives of people affected by this disease, so we can finally say, “ALS did not win.”