We all remember the day when we first learned that we were living with multiple sclerosis. For me, my diagnosis shares another day of historical significance that the world is familiar with – July 20, the date of the Apollo 11 landing on the Moon – albeit my ‘Eagle’ landed in 2000, not 1969. As it turns out, I was born in 1969 and had dreams of becoming an astronaut and pursued those dreams by securing a nomination to both the US Air Force and Naval Academies when I was in high school. During my last physical before selections were made, an Air Force ophthalmologist diagnosed me as being oh-so-slightly nearsighted despite having 20/20 vision, which meant that I would need a waiver should I want to go to flight school (which was my motivation for going to the academies in the first place).
I went home that evening and had a true Robert Frost moment. Two paths were now before me: one that could lead to the academies with an uncertain future after graduation and another that had no definition at all. Little did I know that even if I had chosen the path that could have led to my becoming a fighter pilot, and then improbably being selected for the astronaut corps, I would have washed out of the entire program… because I would be diagnosed with multiple sclerosis (MS) fourteen years later. Funny how life steers you toward the path that you are meant to be on (more on that later).
When I was diagnosed twenty years ago, I knew nothing about MS, so much so that when my neurologist told me, I said that I was “too old to be one of Jerry’s kids.” My wife, who was sitting next to me, politely explained to me, “That’s Muscular Dystrophy, Greg, not MS.” It was shortly after that diagnosis that I reached out to a colleague whom I knew served on the National Multiple Sclerosis Society’s (NMSS) Board of Trustees and said, “Tom, I just learned that I have MS and have no idea what I am supposed to do now.” It was because of his compassion and experience with the Society that I connected with the NMSS, and the National Institutes of Health (NIH), early in my journey, and ultimately, why I am now serving as a Consumer Reviewer for the Multiple Sclerosis Research Program (MSRP).
For nineteen of those twenty years, my experience with MS has been relatively benign, which I attribute to early treatment with disease modifying therapies (DMTs), having expert care and access to investigational therapies at NIH, and to just plain good fortune. I really appreciate and respect what the doctors, nurses, scientists, and other staff at NIH do. I may be a patient volunteer who is helping them learn more about the disease so that they can develop more effective treatments and, hopefully, a path to a cure for all of us who are affected by MS, but I also know that my own experience with MS has been moderated to some degree through their research and care. I now say the same about the researchers who submit proposals to the MSRP. That we are blessed in this country with some of the brightest scientists and physicians who decide to serve our nation by doggedly pursuing therapies and pathways to a cure for those of us living with MS is an understatement.
Due to my work in government relations at the University of Central Florida, it was natural for me to want to get involved with the National Multiple Sclerosis Society and to contribute to their advocacy efforts. I have served on the Board of Trustees for three NMSS Chapters (Mid-Florida, Maryland, and the Greater Washington, DC – Maryland chapters) as well as on the national Activism Advisory Committee. I participated in several of the Society’s Public Policy Conferences where I would regularly dash between congressional meetings of the Maryland delegation (where I live) and the Florida delegation (who I work with). Advocating on behalf of the Society and others living with MS by explaining how important research funding is has been especially rewarding because I know that in those meetings, I am making a difference.
While I had been involved in advocating for the MSRP, it wasn’t until I was nominated by the NMSS to serve as a consumer reviewer that I really began to understand what it was all about. Having worked for a research university for the past twenty years where I regularly meet with faculty to discuss their research projects, as well as my interactions with the scientists at NIH, I was accustomed to delving into the science that undergirds their work, so that experience served me well heading into the proposal review stage. Nevertheless, the whole MSRP experience felt like a crash course in medical school.
Serving as a consumer reviewer is not for the faint of heart! In the beginning, as I was reviewing along with these eminent physicians and scientists, listening to them discuss the nuances of the proposals, it was daunting, even a bit exhausting. I wanted to contribute something of value to the process. However, I quickly began to understand that it was not about my ability to distill the scientific underpinnings of the proposals as much as being able to communicate what impact those proposals would have on someone living with MS were they to be successful. To be able to envision what a proposed treatment – or even cure – would mean for those of us living with MS. This is the perspective that we, the consumer reviewers, add to a process that reviews the science and also takes into account the value those potential successes would have for those of us who would be directly impacted by the results.
The course of MS, as we know, is unpredictable. But so is life. The journey from my wanting to be like Maverick (‘Top Gun’) in the 1980s to simply wanting continued mobility in the 2020s is one that I could never have imagined. But there is this blessing: Living with MS has given me a sense of empathy that I would not have had otherwise. Along the way I have learned that there is not one fork in the road, but a continuum, and as MSRP researchers and others pursue their work learning how to alter the course of MS, the road becomes a little bit easier to travel, and the options for choosing which path to follow all seem a bit more hopeful.
Last updated Friday, December 4, 2020