Nick Sireau became a new father in 2000. However, the usual joys of parenthood were quickly cut short when Nick discovered his son had black bone disease, also known as alkaptonuria, a debilitating condition for which there was no treatment. Two years later a second son came into Nick’s life, similarly afflicted. Nick, a solar power entrepreneur, embarked on the journey of a lifetime to find a cure. Raising money any way he knew how, from half marathons to grants from the European Commission, Nick funded and led the research needed to repurpose a drug and get it approved for alkaptonuria. Click here to watch the incredible story of courage, resilience, and a refusal to give up that produced a near-perfect treatment for an ultra-rare disease that diminishes the lives of over 20,000 patients worldwide. Repurposed drugs for ultra-rare diseases rarely see the light of day due to lack of commercial incentive. Heroes like Nick, and rare disease patients everywhere, need policy-based help to provide the incentives for investors and pharmas to move more promising assets forward. At Life Science Nation, we are dedicated to connecting innovators with the capital they need to help patients. Join Nick and other heroes at Life Science Nation’s RESI conferences and become part of the solution.
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