Colleges & Universities
Biotech & Pharma Companies
Drugs in Development
We have a fantastic line-up this year with many "stories of inspiration"! The show will include:
Following the show, a networking/social segment with local stakeholders in the neuromuscular disease community will be held in the Atrium of the Harvard Science Center.
Max Amini — world-renowned stand up comedian and actor, who regularly performs at The Comedy Store and Laugh Factory when not performing shows around the world. Born to Iranian parents who immigrated to the US, he started a stand-up comedy show, named "Exotic Imports", featuring second-generation Americans coming from diverse cultural backgrounds. Recently, Max's father bravely fought a personal battle against ALS, and we are fortunate to have the support of Max in the fight against muscle disease.
Shane Burcaw — writer, speaker, and blogger with over half a million readers. Shane started a non-profit organization called Laughing at my Nightmare, Inc. His mission includes helping people overcome adversity through humor, and raising money for families with muscular dystrophy so that they gain access to equipment they need to fully live their lives. Shane himself is affected by Spinal Muscular Atrophy, but that hasn't stopped him from winning 2 Emmy awards, putting on a monthly podcast, appearing on the Katie Couric Show, and giving speeches all over the country.
Tayjus Surampudi — Harvard sophomore concentrating in Government. Although Tayjus has Duchenne Muscular Dystrophy, he has not let the disease stop him from following his dream of becoming an advocate and lobbyist for others with muscular dystrophy. He has worked very closely with leading DMD patient organizations such as Parent Project Muscular Dystrophy, and serves on several patient advisory panels. He has also brought a patient perspective to companies such as Bristol-Myers Squibb in a collaborative effort to design patient-centered DMD clinical trials, and shared his journey with members of the DMD program at Sarepta. In addition, he has interned at PTC Therapeutics and is currently an intern at Solid Biosciences. Tayjus is also president of the Harvard College Disability Alliance.
We met in graduate school at MIT and Harvard, and decided that in addition to using research to find cures for these debilitating disorders, we would also band together to start an event to raise awareness of muscle diseases, facilitate interactions between stakeholders in the neuromuscular disease community, and inspire the next generation of scientists to join the fight. By working together, patients, scientists, biotech, and pharmaceutical companies can make more rapid progress towards finding new cures.
Eric Wang's family is affected by myotonic dystrophy. Eric received his PhD from the Harvard-MIT Division of Health Sciences and Technology, and recently moved to University of Florida, where he studies this disease.
Sharif Bordbar's family is affected by Becker muscular dystrophy. Sharif recently received his PhD from Harvard, where he studies muscular dystrophy with Amy Wagers.
Albert Almada's family is affected by Duchenne muscular dystrophy. Albert received his PhD from MIT, and is a postdoctoral fellow with Amy Wagers at Harvard, where he also studies Duchenne muscular dystrophy.
Chris Anselmo has been affected by Miyoshi Myopathy since he was 17 years old. He will complete business school at Boston College in 2016. Chris also actively writes a blog hosted by MDA, where he describes both the struggles and triumphs of living with muscle disease.
Together, we represent a microcosm of the relationships that we hope to facilitate in Boston. We aim to bring together ALL stakeholders for muscle disease, including scientists, medical professionals, entrepreneurs, biotech/pharma leaders, venture capitalists, non-profits, patients, families, and the general community. We're hosting an evening of food/drink, stories, and entertainment - to bring together people from all different spaces and backgrounds - so that we can accelerate progress towards the goal of finding treatments for these neuromuscular diseases.
Donations will be used to support a research grant program geared towards encouraging innovation in the muscle disease research space. Young investigators who are already performing research in an established laboratory, but are in need of support to pursue novel, risky hypotheses are encouraged to apply. Donate HERE.
Our first event was held in 2013, at The Estate Boston. We brought together over 200 stakeholders for muscle disease, told our stories, and raised over $20,000 for Myotonic Dystrophy Foundation and Muscular Dystrophy Association.
This event was held at The MIT Museum. We again brought together multiple stakeholders for muscle disease, and our special guests shared their stories. Guest speakers included Christopher Anselmo, Ona McConnell, Ilan Ganot, and Pat Furlong. We raised over $20,000 for the Myotonic Dystrophy Foundation and Parent Project Muscular Dystrophy.
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