Josh Sommer, a Rare Disease Research Advisor to the CDCN, is the Founder & Executive Director of the Chordoma Foundation. The Chordoma Foundation is one of the leading rare disease foundations worldwide and has been a benchmark organization that the CDCN has looked towards during our growth.
Josh was diagnosed with a skull-base chordoma in 2006. Unwilling to accept the limited treatment options available to chordoma patients, he joined the lab of Dr. Michael Kelley at Duke University, where he spent the next two years studying chordoma. There, he experienced the very practical challenges faced by virtually all would-be chordoma researchers – insufficient funding; scarcity of tissue, cell lines and animal models needed for experiments; and isolation from others studying the disease. To solve these problems and proactively advance the search for a cure, Josh co-founded the Chordoma Foundation in 2007. Under his leadership, the Foundation has united and expanded the chordoma research community, and has vastly accelerated the pace of chordoma research. As Executive Director, Josh works with the Foundation’s research partners, advisors, and supporters to design, execute, and fund research initiatives focused on developing new treatments for chordoma.