Art’s Story

If Dad were writing his own story, he would have made it one with humor and splashes of color added.  He loved storytelling and the laughter that accompanied it.  When dad told his stories, you could hear his laughter and joy for life across the room! Dad died in 1999 at the age of 72 from ALS, and has left his story to us, his children.

Dad grew up a hard-working farmer.  He married Annie, and together they started a family that would grow to 9 kids. He gave up farming while we were young to start a career in sales.  He estimated building projects by night and sold the materials to build those projects by day.  Dad’s work ethics might easily be summed up in a few of his favorite quotes… “People remember what you do, not what you say,” and “Do your best at whatever is in front of you.” Dad and Mom taught us the values that God and Family would have in our ultimate happiness.  They asked us to work hard, but keep it balanced with fun, family, and friends. In times of adversity, we were taught by Dad to “pull ourselves up by the bootstrap and get moving.” Dads journey with ALS was difficult for all of us. Many times, we had to remind ourselves to “pull on those bootstraps and keep moving forward.”

Our Dad didn’t know that it was a form of Familial ALS that took his life too early.  He didn’t know that 6 of his 9 children carried the same deformity.  He didn’t know the tears that would fall as 5 were diagnosed, and ALS took Peggy.  Had he known, we are certain his words would have been to “pull ourselves up by the bootstrap and get moving”! When Dad was diagnosed 25 years ago, there was no research that offered hope for slowing or stopping the progression of ALS, but things are beginning to change. New research is shining a light on that horizon. 

Researchers have identified our genetic deformity and identified gene silencing techniques that hold a great deal of promise. We have put together a great team by aligning ourselves with Project ALS and Weill Cornell.  With this team, we have put together a plan to slow or stop Familial ALS through targeted research and treatments, but we know we need to make the first move…  we need to “pull on our bootstraps and keep moving forward.”

To jump start the project, our family has personally raised and donated the first 100,000 dollars.  We have also been hard at work getting a committed group of family members together for blood and tissue samples for testing. We have a plan, and it’s going to take a lot of work to implement, but we know “people will remember what we do, not what we say.”

Don’t worry Dad, we are doing our best, demonstrating for others the need for Familial ALS research and treatments, so the next generation has hope. We remember all you taught us, and we will keep the Weber Spirit alive for ourselves and all who walk with us.

All our love,

Annie, Sharon, Cindy, Cathy, Jerry, Peggy, Jean, Jim, Richard, and Mike