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Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

Our son Aaron was 11 years old when he was diagnosed with a clival chordoma in Nov. 1997. At that time very little was known about this rare disease. Throughout our 7 year journey we only knew of one other person in the USA with this disease so this one family in Texas (we lived in NC) comprised our "chordoma community". After multiple surgeries across the US, proton beam radiation at Loma Linda (which was the only facility in the US offering PB), and a gallant fight, Aaron succumbed to this persistent tumor in Aug. 2004. He had just graduated from high school with highest honors in May, 2004. When we learned about the formation of the Chordoma Foundation in 2007, we knew this was something in which we had to be involved. We attended the very first Chordoma Community Conference in Bethesda, MD in March, 2008. From the start we realized what a unique and highly driven group of people were involved in this Foundation. We immediately felt a strong bond with the group even though we were the only people there who had lost a loved one. Unfortunately, there were a number of people there whose involvement continued like ours. . . The Chordoma Foundation has made exponential progress in the past 10 years. If I were a newly diagnosed chordoma patient I would be quite optimistic about my outcome. This is a patient driven Foundation with strongest of ties to their research and medical community. I'm not sure there is any other community with this high level of interaction and communication. The CF deserves every recognition available not only for their excellence and success but for their personal interaction with patient/family/caregiver population. Karen Sain

Role:  Donor