Earlier this Spring, I had the honor of taking part in the 3rd annual Strength, Science and Stories of Inspiration event at the Harvard Science Center in Cambridge, Massachusetts. As a patient with dysferlinopathy (a form of muscular dystrophy), I was heartened to see every seat in the 500-person auditorium filled to support the mission of finding cures for neuromuscular diseases. The event, of which I am a co-organizer, was founded on a simple premise: bring together all stakeholders in the local muscle disease community for a night of networking, storytelling and fundraising.
The Beginning
The event was founded in 2013 by three talented researchers – Albert Almada, Sharif Tabebordbar and Eric Wang. Each of them attended graduate school in the Boston area – Albert and Eric at MIT, Sharif at Harvard. What makes their stories especially compelling is that they each have family members who have muscular dystrophy and have dedicated their careers to studying neuromuscular disease and seeking breakthroughs that will one day lead to treatments.
I joined their efforts after learning about the inaugural event on Facebook. I was unable to attend the first event in 2013 but was determined to help them one way or another to make it sustainable and successful going forward.
The first event was held at a club in downtown Boston in September 2013. On that night, Eric, Albert and Sharif shared their personal stories in front of 150 guests. They talked about what it was like to grow up with family members who had muscle disease and how they decided to become scientists in order to find a cure.
For our second event in November 2014 (the first that I was involved with), we had nearly 200 guests in attendance at the MIT Museum in Cambridge. Several speakers shared their stories that night, myself included. It was nerve-wracking but gratifying to get in front of such a large audience and tell people what it was like for me to go from ability to disability. It was also the night where I realized that I loved public speaking and sharing my story, and I continue doing that to this day whenever I get the chance.
More importantly, this was the event where we got to meet our (now) good friends Tayjus Surampudi and Shane Burcaw. Tayjus, who has Duchenne muscular dystrophy, is about to enter his junior year at Harvard University. Shane, who has spinal muscular atrophy, is an author, speaker, and runs a nonprofit organization called Laughing at My Nightmare.
A Special Night
This year we expanded the mission of the event by raising money to establish the “Strength, Science and Stories of Inspiration-MDA” research fellowship aimed at recruiting bright young scientists to the muscle disease field. Our motivation is to fund a high-risk, high-reward idea that might not otherwise get funded and to build a stronger team of researchers in the fight against muscle disease. It is important to mention that this fellowship could not have been possible without the support of the MDA, who played a vital role in co-sponsoring the grant and in matching the raised funds. We are fortunate to have the MDA as a partner and look forward to growing this relationship going forward.
As for the event, an essential component each year is the “stories of inspiration” – patients or family members of patients who share what it is like to be impacted by muscle disease. Over the years we have heard several compelling and emotional stories that resonated deeply with everyone in attendance. Our natural choices for speakers this year were Tayjus and Shane, and they did an exceptional job. They captivated the crowd and we were lucky to have them speak. In addition to facing the trials and tribulations that all people with muscle disease face on a daily basis, they are shining examples of MDA’s Live Unlimited motto.
After they spoke, Lianna Orlando, scientific program officer at the MDA, gave a great presentation on the MDA’s various program offerings and introduced the premise of the fellowship to the audience.
For our main act we were fortunate to have comedian Max Amini perform. Max is not only a talented and hilarious comic, but he is also an MDA family member. He had the audience laughing nonstop throughout his hour-long set. I personally hadn’t laughed that hard in a while. Sometimes I forget how important laughter is in fighting the mental toll that my muscle disease takes on me every day.
Going Forward
Overall it was an intense, action-packed night, and although I was exhausted by the end of it, I had a blast. Just as important as the event, however, was what happened afterwards at the reception. Patients, researchers, business people and the general public rubbed shoulders and made new connections. People talked informally about the issues that needed to be addressed in order to find cures and how they could collaborate to find solutions going forward. Several people offered to help us with organizing next year’s event, which we are excited about.
Every year this event continues to grow and get bigger. Although started by three researchers who wanted to help make a difference outside of the lab, the event is not just their event, or my event; it is your event as well. It can only be successful if everyone feels like they are a valued stakeholder. The truth is, whether you are a patient or a researcher, a member of the biotech industry or the business world, your perspective is important and crucial in finding a cure that we all so desperately want.
We hope you will join us at our next Strength, Science and Stories of Inspiration event. In the meantime, if you would like to help contribute to the fellowship, visit our GoFundMe page.
