This past December, I was at Union Station in downtown Chicago with members of the ALS Association Greater Chicago Chapter. We were there for Shake the Can, an event to raise funds for ALS research and spread awareness of the disease across the city. Throughout the day, an alarming number of people approached me to ask questions. What is ALS? Is Lou Gehrig’s disease similar to ALS? Is ALS fatal? What is this thing about veterans and ALS?
I was very shocked.
How on earth can we expect to end ALS if few people know about the disease? I found this unacceptable and decided I had to do something about it. I started teaching other college students in Iowa about ALS this past semester. I soon began thinking about teaching younger students, especially those interested in science. What if I could inspire them to take action against the disease at a young age or even to pursue a career as an ALS researcher? I wouldn’t be able to make an impact on every student, but I knew I could inspire a least one student and that was what mattered most. It was a perfect way to raise awareness of ALS and I knew a fabulous place to start – my former junior high school!
Last week, I went back to Independence Junior High School (IJHS) in Palos Heights, Illinois and spoke to each science class about ALS. Before I spoke at IJHS, I spent countless hours preparing – creating a PowerPoint, reviewing material about ALS, perfecting my introduction, etc. As the hours began winding down, I grew extremely worried. What if a student’s parent or sibling had been diagnosed with the disease and hadn’t been told yet about the final outcome? What if the students thought I was boring and everyone started falling asleep? What if they didn’t care about ALS? I soon found myself remembering the wonderful people with ALS I had met over the past few years and knew I had to do this. Feeling much stronger, I pushed my worries to the back of my mind.
A normal school day for IJHS consists of nine class periods. I spoke during seven of the nine class periods. The first presentation was by far the most difficult. I had to first mold out my script and had no idea how the students would react when I spoke. To my relief, the first presentation went off without a hitch. There were so many children in the audience interested in my presentation and a handful of bright individuals asked fabulous, thought-provoking questions. I was pleased to see so many young students mystified by the disease. The second presentation soon arrived. During this talk, I suddenly grew very tired and lightheaded. Thoughts of sitting down and giving up started to cross my mind. Keep it together, Sarah, for Dr. McLaren and everyone else fighting ALS. When life gets hard for Dr. McLaren, he never says ‘Forget this’ and gives up, does he? No. You can do this. Putting a smile on my face, I finished the second presentation with two short videos – one of Steve Gleason and the other of ALS clinical trials.
The third presentation passed by without any troubles. By the time the fourth presentation rolled around, I was so exhausted I desperately wanted to crawl back into bed. But it truly felt incredible to teach people about the disease. I had so much hope that one of these students would join me in the laboratory one day. Together we would work on finding an effective treatment for ALS, but I still had three more presentations to go and a lot more teaching to do! I knew I could do it. I had come this far already. I continued on and spoke about Team Gleason, clinical trials, and more. I knocked my fourth speech out of the park. Many students asked about Dr. McLaren. I told them about how he inspired me to take action against the disease, his current condition, and his amazing book project. I felt so proud to tell these students about my friend and could see the impact he was making on other people. Although the last few presentations went smoothly, a handful of students asked the same question repeatedly. Is there any cure for ALS? Over and over again, I sadly told them there was nothing to help people with ALS at all. I felt so bad to give them this terrible news, but soon realized that in order to solve this problem, I needed to tell them this information.
Overall, the day was anything but easy. With only a few minutes between each presentation, I sat down only during my lunch break. My throat was on fire from excessive talking. I was absolutely exhausted after just two presentations because I hadn’t slept properly for a week, but I still put forth my absolute best every second of the day for Dr. McLaren. I am very proud to say that by the time I finished the seventh and last presentation, I taught over 200 middle school students from Palos Heights, Alsip, and Crestwood, Illinois about ALS. I know it may not seem like a lot when looking at the total number of people in this world who are unaware of the disease, but it is still a step forward. That’s over 200 more people that know about the disease than there were before. We may not be able to teach everyone about the disease all at once, but if we continue to teach students across the country and beyond, ALS may become one of the most well-known diseases around.
I was recently featured in the Times-Delphic newspaper! Please go to http://bit.ly/1nASW6y