During his freshman year at Duke University, a persistent headache sent Josh Sommer on a diagnostic journey. The reveal: a tumor right below his pituitary gland in front of his brainstem. Called a chordoma, this slow-growing, malignant sarcoma of the bone and soft tissue is extremely rare, affecting only 1 in 100,000 people.
As he read through the sparse studies for his rare disease, Sommer made a remarkable discovery: a Duke connection. Michael J. Kelley, MD, a medical oncologist at Duke Cancer Institute, was also a co-author of a paper on the genetics of chordoma. During this period, Sommer joined an online support group of other chordoma patients and family members who were also motivated to improve the outlook for the disease. Together they brainstormed the idea for the
Since the foundation's formation 16 years ago, 11 new chordoma therapies have entered clinical trials through its support. The organization has also secured over $20 million in research investments, helped more than 300 researchers work together, screened 6,000 drugs against chordoma cell lines, and provided free, personalized support for over 3,000 families.
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