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Page: << Prev | 1 | 2 | 3 | Next >> Gardner and his colleagues recently devised a new technique to get at the tumor by going through the nasal cavity, which reduces the risks of brain surgery. He spoke at the second annual Chordoma Community Conference in June, sponsored by the Chordoma Foundation. The foundation was started by Dr. Simone Sommer, a physician from North Carolina whose son Josh was diagnosed with chordoma in 2006 during his freshman year at Duke University.
Gardner said the foundation, which has already raised almost $1 million for research, has helped encourage scientists to tackle chordoma tumors in their laboratories. The foundation has also put together two research conferences to entice scientists to study the rare cancer.
Daniel Alter spoke at a recent meeting of the Chordoma Foundation, sharing his story of hope. He's now a dozen years beyond his surgery and radiation treatments.
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"Chordoma is no longer a constant thought," Daniel said during a recent interview. The cancer left him with partial hearing and a speech impediment, but it has never stopped him from living.
"In a word, this has given me perspective," he added. "I realize what is and what is not important. I do not worry about what other people think is important. I know what I think is important."
His family is number one on the list. He is the oldest of four children and the only boy. He graduated from the University of Texas at Austin last year with a double major in archeology and anthropology and hopes to work on a project next year in Israel. The topic: archeology and the Bible.
"Research is the only way we will be able to develop treatments that save more people," Daniel added.
Dr. Sommer and her son Josh agree. On the heels of her son's diagnosis, she began combing the scientific literature. She found a scientist at Massachusetts General Hospital who had published two case reports of patients with tuberous sclerosis who developed chordomas along the spine. Sommer asked the scientist, Vijaya Ramesh Ramesh, whether she thought the genetic mutations on two tumor-suppressor genes linked to tuberous sclerosis could be involved with the development of chordomas.
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