Roger's story: ALS research at Washington University School of Medicine

It started on my hands but then my wrists went very quickly. My shoulders are also very, very weak now. In the morning you saw me because if you don't, they'll shoot me. It can do many things. He is very stubborn and likes to try to do everything himself, but he has a certain reserve every day. We met in high

school

, so we were high

school

sweethearts. And we have been married for 38 years. And they have been wonderful years. My hobby was being a fitness buff. When I started to realize I couldn't do as many reps lifting weights and I couldn't put in as many miles on the elliptical or bike.

And I thought it was age and that's when I went to my physical therapist and he told me to see a neurologist as soon as possible. ALS has mainly affected Roger's arm strength. ALS is an adult-onset disease that affects about 30,000 people in the United States. It causes severe weakness that causes problems speaking, swallowing, breathing, and moving arms and legs. Roger is involved in the SOD-1 half-life study. And we're trying to understand how long this protein called superoxide dismutase 1, or SOD1, stays in the cerebrospinal fluid. And the liquid that we get from this study, we will be able to use it for a wide variety of different proteins to deepen the understanding of ALS and, we also believe, develop markers for new drugs to understand whether or not. whether or not they are working faster than before.

The only way to find a cure for ALS is to have brave volunteers enroll in clinical trials. The only way for drugs to be tested, the only way to move forward, is for people like Roger to participate in trials. We feel like we have been very blessed to be in a community that has a strong faith. Faith is how we move forward, it is our rock. I care and I want to help. Everyone here, I mean, everyone cares about you and wants to find a cure for this disease. It's just exciting, it's so obvious. When you are diagnosed with ALS, they don't give you hope, there is no hope.

But WashU gives you a little hope because you know they are working hard and trying to find something that will slow down this disease or reverse it. And it won't help me anymore, but it's exciting, you know, I hope that soon they can have a cure for ALS and that makes me feel really good.