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Speaker Highlight: Kevin Gosnell

Kevin Gosnell makes a strong first impression. He’s a broad-shouldered guy with a big smile, a thick Boston accent, and years of experience as a leader and team-builder. When he speaks, he fills the room with the expectation that everyone else is listening.  Nicknamed the “King of Asphalt”, he has a friendly, to-the-point way of talking that immediately engages the listener with the openness and plain sense of his conversation. He also has ALS, often known as Lou Gehrig’s disease, a neurodegenerative condition in which the motor neurons that radiate from the spinal cord deteriorate over time, causing the patient to progressively lose the ability to move, speak, eat, and breathe.

Kevin is not shy about his disease. He has a strong desire to use his time to make productive contributions to the world, and he has chosen ALS research as a focus of his work. In his own poignant words, despite all the advances of modern medicine, a diagnosis of ALS is the end of treatment. There are clinical trials, but there is no cure, no palliative, nothing to slow down the deterioration of motor control in the body – a terribly ironic condition for a former athlete. Kevin describes ALS as the “closet disease”: not much is known about it among the wider public, especially about the lack of treatment options. Kevin is determined to help find a treatment, not through research of his own, but by forming partnerships among doctors and researchers.

There are lots of medical professionals whose hard work is dedicated to finding a cure for ALS, and thanks to the 2014 Ice Bucket Challenge that made the rounds of social media, awareness about and funding for the disease is slowly increasing. However, this awareness and hard work has not led to the sharing of information or resources among researchers. In a world where “collaboration” is a buzzword (though it can mean a multitude of things), researchers often work in silos, lacking the networks that might speed progress toward a cure. This is where Kevin’s strengths lie: he has the ability to build strong teams and help people work together, honed by years in sales, marketing, and leadership.

Seventeen million people took the Ice Bucket Challenge in 2014; two million of them donated a total of $115 million. In 2015, researchers at Johns Hopkins identified the TDP-43 protein, mimics of which showed signs of slowing or halting the effects of ALS; experts say that a treatment could be three to four years away. Kevin’s question is, how do we get behind these researchers? How do we help them? How does the ALS community serve the researchers, patients, and families who are affected by the disease? He is determined to use his personality and his skills to contribute to researchers’ efforts; we look forward to hearing about his efforts at his talk in November.