The Weber Family

We’re the Weber Family, and this is our story. It’s a story of loss, heartbreak, love, and hope.

In 1999 our father, Art Weber, passed away from ALS. One year later, we were told that we carry a genetic strain of the disease, and that there is no cure, or even an effective treatment.

It’s heartbreaking to face a family diagnosis like that. Being a Genetic (or Familial) family means that each one of us now had a 50/50 chance of inheriting ALS… and each one of us that carries it has that same chance of passing it onto our children.

Our sister Peggy was diagnosed in 2000 and passed in 2018. Cindy was diagnosed in 2012 and passed in 2021. Jim was told he had ALS in 2012. Cathy and Richard were diagnosed in 2019, and Jean in 2022. Sharon carries the deformity but has no symptoms. Together we have 20 children in our next generation at risk of getting this disease

ALS is a terrible neuromuscular disease. You lose the use of your arms and legs first, and then eventually you experience difficulty swallowing and breathing. Most people with ALS pass away from suffocation. To this day, there has never been hope for anyone diagnosed with ALS, and we plan to change that.

In 2021 our family created NextGen ALS, a non-profit founded out of Love. Our goal is to save the next generation of those families struggling with Genetic ALS, and we need your help! Because of the research we’re doing, together we can finally give hope to those families with Genetic ALS. Thank you so much for your support and generosity. We couldn’t do it without you.