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:
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.
Rob Besecker — Rob Besecker — Author, public speaker, healthcare professional, and global traveler living with heart and muscle disease. After having a defibrillator / pacemaker installed at age 28 and being diagnosed with myotonic muscular dystrophy type II, Rob now advocates for patients, families, and organizations through his work as a hospice account manager and various nonprofits, such as Young Hearts with ICDs, Muscular Dystrophy Association, and Myotonic Dystrophy Foundation. Rising above the daily battles of his chronic disease, Rob encourages others to focus on their goals and dreams rather than their obstacles and medical limitations. He regularly travels the country attending conferences and sharing his own story of achievement and perseverance and recently finished his inspirational memoir entitled Everest Strong: Reaching New Heights with Chronic Illness.
Monkol Lek — Monkol Lek is a senior research fellow at Massachusetts General Hospital and the Broad Institute of MIT and Harvard. He leads the analysis effort at the Broad Center of Mendelian Genomics aimed at improving diagnosis of rare genetic diseases with a focus on rare muscle diseases. As a muscular dystrophy patient, he is a strong advocate of patient driven research in collaboration with academia and industry. In December, he will be starting his own research lab at Yale School of Medicine as an Assistant Professor in Genetics. Monkol is supported by the Muscular Dystrophy Development grant.
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 Tabebordbar's family is affected by Facioscapulohumeral muscular dystrophy. Sharif received his PhD from Harvard, where he studied 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 completed 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 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.
