Along my journey from Tucson, Ariz., to our nation’s capital for the 2013 MDA Scientific Conference, I found myself really taking into consideration what it took for me to get here. I am not referring to countless nights and weekends spent working in the laboratory as a young researcher, a (continuous) pursuit for higher education, years spent working in the biotech industry, or previous time dedicated to coordinating clinical research. Heck, I am not even alluding to the extensive interview process at the Muscular Dystrophy Association (MDA) national headquarters where I started just 12 days ago! I’m referring to truly reflecting on the effort it took to physically get here.
At certain times throughout the morning and afternoon on Saturday I found myself contemplating the “difficulty” it took to lug my heavy suitcases to our final destination. Taking them off of the airport conveyer belt, along the walkway, through the narrow metro gate, up the broken escalator and across the various stations (swarmed with hundreds of people), around the poles and alongside the seats inside each train that were all going the “wrong” way (the metro is currently under construction), onto moving escalators, up the steep hill to the hotel … You get the idea. I couldn’t help but laugh at myself throughout all of this — I may as well have just slapped a bright sticker on my forehead that read “NOT FROM HERE!”
The reason I am writing about this experience is because lately I have been thinking a lot about my mother-in-law, Jessica Wright Pottinger, who battled amyotrophic lateral sclerosis (ALS) — better known in the United States as Lou Gehrig’s disease. What would she have done if faced with the same obstacle course in her wheelchair (which she referred to as her “iron horse”)? Jessica’s hidden and chronic battles included being able to complete mundane tasks every single day — opening the freezer doors at the grocery store, using the restroom at work, transferring her body from her wheelchair into bed, falling on the ground and having to wait there for hours until her son (also her caregiver) came home to find her and help her up. I have to add that she faced each of these challenges, and all others, gracefully and with an often infectious smile. She was not alone in this; these are hurdles that individuals with neuromuscular diseases overcome every single day.
Last week, my husband Travis told me that one of Jessica’s “bucket list” items was to someday see the cherry blossoms in Washington, D.C., as she was an avid gardener. While her strength, perseverance and wit allowed her to realize more important goals — like attending her daughter’s wedding and meeting her beautiful grandson Luke — she never did cross that humble item off her list. As I emerged from deep below the Woodley Park-Zoo/Adams Morgan metro station with my luggage in tow, frustrated but also extremely excited, I was immediately welcomed by the most stunning and bountiful cherry blossoms I’ve ever seen — many surrounded by hundreds of colorful tulips. I was so glad to have maintained my course because the reward was much more beautiful than I could have imagined, primarily because I was able to appreciate it on Jessica’s behalf.
After attending the reception Sunday night, it is clear to me that each person here has given their all; each with unique trials and tribulations and the shared goal of making a positive difference in the lives of others. The next few days will illuminate how, collectively as a scientific community, we are advancing knowledge and therapies, and making great strides. Honestly, I am overwhelmed about all of the amazing science on the conference agenda — there are eight jam-packed sessions! Absorbing the results of all the tireless and fruitful scientific efforts made by the hundreds in attendance will prove challenging — what a wonderful dilemma to have, though. It took a lot of persistence and hard work to get to this point! Consistent effort and unwavering determination are most certainly rewarded. Jessica realized that when she met her grandson for the first time and everyone here at the 2013 MDA Scientific Conference can most certainly identify with the demanding path to success as well. The reward: Turning hope into promise for those impacted by neuromuscular diseases.
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