David Coit’s journey to becoming a dedicated member of the TSC Alliance was both personal and professional. David shared wonderful Maine summers with his nephew Thorpe, who was profoundly affected by tuberous sclerosis complex (TSC). Thorpe passed away from SUDEP — sudden unexpected death in epilepsy — just short of his twenty-third birthday. “I was just a concerned uncle with a very strong personal experience.” He knew he had to do more to help others like Thorpe.
For years, Thorpe’s father John urged him to get more involved with the TSC Alliance. A lifelong business executive, David was immediately impressed with the organization. “They were doing incredible things. And they were much smarter and more efficient about how to spend their dollars, creating within the TSC Alliance the actual infrastructure to support the research. They’re taking the long view.” By investing in early career researchers, David says, the TSC Alliance is “building the bench,” for the next generation of researchers. “Raw talent, combined with tools such as the Biosample Repository, and the preclinical and clinical databases, is an incredibly efficient way to go about research.”
Drawing from his business expertise, he saw a way to take research to the next level — to supercharge the effort to find better treatments, and even a cure, for TSC. That’s when David, along with Jim McGinn, co-founded the 50 Forward Fund, a capital campaign to fuel breakthroughs in treating TSC. He has donated generously and solicited funding for the campaign, which is now over $20 million. As a member of the Board of Directors, David is deeply moved by the efforts of many in the TSC community to raise money for the research fund. “These families are afflicted with the disease, but they don’t have the resources of millions of dollars to find a solution for their child. Yet they’re still raising money from walks and bake sales. They’re putting everything they have into this.”
He says that as an organization, the TSC Alliance is “punching way above its weight.” Not only has it retained its core mission of providing services and clinical care, but it continues to prioritize and fund the most promising research. “Clearly, we are making progress towards making TSC a more manageable disease. That’s heartwarming because, having seen how bad it can be — if that can be avoided, that’s a life-changer for the families who are dealing with it.
Help the TSC Alliance accelerate TSC research by donating to the 50 Forward Fund!