Richard’s Story

You have ALS. These are words heard in my family far too often. I and four of my siblings, along with our father, have been diagnosed with ALS. My dad, Art, passed from ALS in 1999 and my sister Peggy in 2018. My sister Cindy and brother, Jim, heard these words in 2012. My sister Cathy heard them in early 2019 and in the summer, I heard these words. These words forever changed my life, my wife Claudine’s life—and the lives of our three children.

After my dad was taken by ALS in 1999, we learned we have a familial mutation of ALS that carries a 50/50 chance of heredity. From that moment on, the lives of Art and Annie’s nine children would radically change. Now the specter of ALS looms over each of us and our families.

You tell yourself, “I will move forward as normal.” However, I can reflect and say that is not true. It changes a person when you know your chances are high to contract an incurable disease like ALS. It sharpens your desire to live at an accelerated pace. You no longer look forward to the opportunity to retire and spend leisure time with family and friends—you hope for the opportunity! My siblings and I each have our personal journey with ALS. Some heard the words, and some received the great news of not having the mutation. Yet, we all experience the pain and suffering caused by this debilitating disease.

When I heard, You have ALS, Claudine and I cried. We weren’t crying for ourselves. We shed tears for our children. Now they each live with the chance of ALS. We always told them, “Our most important job is to keep you safe.” We couldn’t keep that promise.

Now we are working to fulfill that promise. My siblings, family and friends started fund raising to support ALS research in 2007 and have worked with many initiatives in the ALS community to help fund research and provide care. New developments in genetic research and the identification of our family’s mutation have led us down a new path.

We have started an initiative with Project ALS and Weill Cornell University to research our genetic mutation and bring to bear new technology in gene silencing that can slow or stop the progression of familial ALS.  We are NextGen ALS!  We are dedicated to stopping ALS before it affects the next generation of our families.

To all our children, “Our most important job is to keep you safe.”