It is often said that to be successful one must “think outside the box.” Bragging rights are earned by those who’ve accomplished their achievement(s) in an atypical fashion, with one of the most prized accolades being having done so first (e.g., President Obama signing into law PDUFA V, the first law to increase patient participation in medical product regulation).
A common revelation that I heard echoed at the conclusion of many presentations throughout the entire 2013 MDA Scientific Conference was “MDA gave me my first grant.” I really appreciated the opportunity to learn about all of the impressive, continuous developments made possible by MDA-funded research. However, I would like to revise these humble declarations of gratitude made by grantees. MDA may have recognized their talent early and funded their first award, or their research along the way (perhaps even now), but these grants weren’t given to them — the funding environment is extremely competitive, and they’ve earned them!
Obviously thinking “outside the box” helps to pave the path for progress (and funding). On the other hand, as everyone is working diligently to make headway in their respective areas, taking time to think back inside the box with peers is vital — especially while communicating critically and constructively. Nevertheless, assessment with the goal of improvement is only as productive as the members who are brought to the table. This is exactly why the breadth of diseases covered by MDA is so crucial — it allows for the unique, continuous opportunity and ability to bring so many stakeholders to the dialogue (for the exchange of information, inspiration of new ideas, considerations and methods for improvement, and the justified tooting of horns).
Successfully bringing together so many torch-bearers from the academic, public and private arenas to “play in the same sandbox” was the greatest accomplishment of the 2013 MDA Scientific Conference. Now our individual assignment is to ensure that every gem we’ve each uncovered in the sand these past couple of days is treasured long after the dust settles.
As most of us head home in the next couple of days, I implore everyone to take the time to really try and find relevantly meaningful ways to incorporate these “gems” into their specific projects or program development strategies — especially after we are all back “outside the box” again and in the habit of our regular routines. Realistically, this may prove to be a very difficult task. Nevertheless, it is necessary to collectively challenge the status quo in order to help patients and families who are anxious for any glimmer of improvement in their own daily lives and routines.
I have to say that I don’t actually know who the following two individuals are, or the context of their conversation. Regardless, when I overheard their brief (and muddled) exchange during a short break, I felt compelled to share it:
Woman: “We met at lunch, thank you for the work you do. I forgot to mention it but my two sons have myotonic dystrophy so please, be hard on these guys, ask questions and be critical — not everyone should get a trophy ... "
Man: “The ultimate result of competition is that we all do better … These guys have a real burning desire to do something, to change the world.”
Woman: “That makes me feel better about everything.”
Hearing the short exchange above made me feel proud to be a member of this community. Scientists by nature are inquisitive and critical — it is encouraged as part of the job and we’re all better for it. However, a compelling aspiration to help others is not always an innate trait. At the end of the day, the reason we all find ourselves working to develop therapies (and ideally, cures) for rare neuromuscular diseases is not for bragging rights or trophies, it’s to make a difference that is specifically meaningful in the lives of patients and their families all across the world — to ensure that they are given both a voice and an opportunity to reach their milestones. This is our combined mission.
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