I was diagnosed with ALS in October 2008.
I had been a competitive long distance runner since the late 1970s, when I was in my 30s. I had competed in 26 full marathons and hundreds of shorter races. About 2 years prior to my diagnosis, I began to have difficulties with balance and tripping. Needless to say, my racing times became slower. My life was immediately impacted by not being able to compete in races and, then, not being able to run. Running had been my passion, and I was the picture of good health. As the disease progressed, I had to use a cane, then a rollator, and now a wheelchair. Of course, I have had to adapt to being physically less active.
Since my diagnosis, I have felt an urgent need to be an advocate for ALS, to promote awareness, research, and fundraising to help find treatments and, hopefully, a cure for this debilitating disease.
This desire resulted in my participation in three clinical trials at Johns Hopkins (Robert Packard ALS Research Center) in Baltimore, Maryland. I also helped raise funds for research by participating in The Fiesta 5K for ALS Research the past 4 years. This May will mark the fifth year our team, "Running for cArLSon," has competed; our team has raised over $58,000.
I was selected to speak before an FDA panel regarding the process of getting new drugs approved for ALS. Our purpose was to encourage a more efficient process to get drugs or treatments to market faster. Since ALS is a progressive terminal disease, time is of the essence for those in its grip.
This past year, I was nominated by the Robert Packard Center for ALS Research to participate in the Department of Defense Amyotrophic Lateral Sclerosis Research Program. I served as a Consumer Reviewer during the last peer review of applications in December 2013.
I believe that as a Consumer Reviewer I can bring into the process the perspective of an actual ALS patient who is living with this progressive disease - the viewpoint of how someone with the disease feels about how the proposals, if successful, would affect him and others in the ALS community.
This was an exciting experience and I was honored to be a part of it. I feel that my participation could help make a difference for those diagnosed with this disease now and more so for those yet to be diagnosed. The scientific reviewers enlightened me on their efforts to find a cure. There are so many talented researchers/scientists diligently working on new ideas, which is so encouraging to those diagnosed with the disease. Research and science is the answer.