Earlier this month, I attended the 4th annual Strength, Science and Stories of Inspiration event at MIT’s Kresge Auditorium in Cambridge, Massachusetts. As a co-organizer and patient with dysferlinopathy/miyoshi myopathy, I am proud to see what this event has become in four short years.
Strength, Science and Stories of Inspiration (SSSI for short), which I wrote an article about last year is an annual event that brings together different stakeholders in the Boston-area muscle disease community. Our audiences have consisted of patients, family members, friends, researchers, businesspeople – even the general public who have no connection to muscle disease. Many heard about the event through a friend, showed up, and have been supporters ever since.
This year, we had two fantastic patient speakers and saw the return of comedian, MDA family member, and friend Max Amini. The night also represented an important milestone in the evolution of the event, as we awarded our very first research fellowship to a promising young scientist. With the help of MDA, we were able to make this longtime dream of ours a reality.
It’s hard to believe SSSI has been around for four years now.
The idea for the event was formulated in 2013 by three researchers – Eric Wang, Albert Almada and Sharif Tabebordbar – who were getting their PhDs in the Boston area at the time. They became muscle disease researchers for a simple, yet profound, reason: they each had a family member with a form of muscular dystrophy. They had known each other for only a few short months, but knew quickly that, outside of their research, they wanted to work together to do more. After brainstorming over dinner, SSSI was born.
I almost missed finding out about the event entirely. I was absentmindedly scrolling through my Facebook feed one day when I stumbled upon a friend’s post about the event. I read their backstories, and how they each had family members with a muscle disease, and I knew I had to find a way to attend.
I soon realized that I was going to be out of town that weekend, which greatly disappointed me. On a whim, I sent them an email – not expecting to hear anything back from them for a while, if at all – hoping to perhaps connect to see if there was a way I could help plan the next event.
Almost immediately I got a response. They wanted to meet me, and we set up a time to meet a couple weeks after the event.
On a rainy October morning in 2013, we met at an Au Bon Pain in Cambridge’s Central Square. I don’t exaggerate when I say they are three of the most easy-going, humble people I’ve ever met. They talked about the successes and failures of putting on the fundraiser, what they enjoyed, and what needed to be improved for the next time. I learned more about their goals for the event, specifically, how they had a dream of one day creating a fellowship to sponsor high-risk, high-reward research. They shared their family stories, and I shared what it was like to live with an adult-onset muscle disease. Next thing I knew, I was a co-organizer!
I left that meeting feeling uplifted and honored to join their cause. They had promising futures as researchers, but you could tell the impact and personal toll muscle disease was taking on their family members’ lives.
Science was their passion, love their motivation.
I have been part of three SSSI events now, and each has been special in its own way. The 2014 event, our second, was primarily a storytelling event. We had a powerful lineup of speakers who shared what it’s like to live as a patient or family member of someone with muscular dystrophy. There were very few dry eyes in the house that night. I had the chance to share my story and it was a huge thrill.
Last year’s event, our third, was the first where we had an official run of show. We featured two powerful patient speakers, Tayjus Surampudi and Shane Burcaw, followed by Max as our headlining comedy act.
The event was also noteworthy in that our long-time goal of sponsoring a research fellowship was one step closer to fruition. With the generous support of MDA as our co-sponsor, we officially announced the SSSI-MDA Research Fellowship. In short, we were looking for researchers to submit proposals with out-of-the-box ideas, which, whether or not they were successful, would still make a valuable contribution to science.
Putting it all together
Although I look forward to every event, I was especially excited for what we had in store this year. We had a great lineup, and we were ready to announce the winner of the fellowship.
We secured two speakers who we knew would knock it out of the park. Our first patient speaker was Rob Besecker, a tireless supporter of MDA, who talked about life with myotonic dystrophy and how his health setbacks motivated him to pursue one of the greatest physical challenges of all, climbing Mount Everest.
Our second speaker was Monkol Lek, a talented researcher in the Boston area living with limb-girdle muscular dystrophy. I had the honor of interviewing him a few months back, and he has one of the most fascinating life stories I’ve ever come across. His story was both hilarious and jaw-dropping.
Next, we acknowledged our SSSI-MDA Research Fellowship winner, Maya Maor Nof – a postdoctoral researcher at Stanford University whose ALS research proposal greatly impressed our reviewers. We received a lot of applications, and to choose a winner was tough. But in Maya, we know we have a worthy recipient.
After the inspiring talks given by Rob and Monkol, and the emotional awarding of our very first fellowship winner, it was time for laughter. The show culminated in an hour-long comedy set from Max Amini, who was gracious enough to come back a second year in a row and headline the night.
Max is a talented comedian to begin with, but what was especially touching about his set – and what some members of the audience were unaware of – is that he has seen firsthand the impact of ALS on his family. Max has been a great champion of our event, and we are grateful for his continued support.
Overall, it was a whirlwind of a night. These types of events exhaust me, since I don’t have much energy anymore. But it’s the good kind of exhaustion. I was relieved and satisfied we put on a successful show, and it was gratifying to see so many familiar faces in the audience come out to support something so near and dear to our hearts.
Someday this event will no longer be needed, and I look forward to that day. But in the meantime – in the spirit of the event – we fight on, we share our stories, and we move closer to a breakthrough, together.
Help MDA continue to fund groundbreaking research.