I had the privilege of attending a Chordoma Foundation (CF) meeting/gathering in Raleigh earlier this month. Among the group of 25, there were five researchers there who are specifically focused on brachyury research, one of which was Dr. Charles Lin: There's an excellent video at this link that outlines what brachyury is, and the quest to find it's Achilles heel. Dr. Lin reiterates that turning brachyury off is a solvable problem, and other researchers echoed his thoughts... all of them. It's not a matter of 'if', but 'when'.
Another researcher Dr. Opher Gileadi mentioned something in a context that fascinated me, I had never really thought about it. As a scientist, funds are typically granted for something specific, but it's in a bubble/silo of sorts. He mentioned that it can feel like he's not part of a solution for actual people that he can relate personally to. That evening an additional 60 people joined in for a sponsored dinner. Dr. Gileadi mentioned being inspired having met actual human beings who are impacted and united to cure this rare disease. Meeting with other researchers who are focused on brachyury seemed to energize each of the five researchers (and the rest of us!), and the scientists can all build upon one another's brachyury progress to date and from other lessons-learned. Mingling with actual patients, spouses, and parents seemed to invigorate them at a personal level: To quote Dr. Lin he and his team are "working on something that really matters." It's a 30 second read and three minute video link here (but this time actually click on it : )
There were several couples there who had lost a child to chordoma, so we have that uncommon bond. I really like that they're staying involved with the CF, and I think they were glad that I'll stay involved carrying the baton for Madison. Below, a picture of Josh Sommer, and one with Madison and Josh at the 2006 Chordoma Community conference in Boston.
Another researcher Dr. Opher Gileadi mentioned something in a context that fascinated me, I had never really thought about it. As a scientist, funds are typically granted for something specific, but it's in a bubble/silo of sorts. He mentioned that it can feel like he's not part of a solution for actual people that he can relate personally to. That evening an additional 60 people joined in for a sponsored dinner. Dr. Gileadi mentioned being inspired having met actual human beings who are impacted and united to cure this rare disease. Meeting with other researchers who are focused on brachyury seemed to energize each of the five researchers (and the rest of us!), and the scientists can all build upon one another's brachyury progress to date and from other lessons-learned. Mingling with actual patients, spouses, and parents seemed to invigorate them at a personal level: To quote Dr. Lin he and his team are "working on something that really matters." It's a 30 second read and three minute video link here (but this time actually click on it : )
There were several couples there who had lost a child to chordoma, so we have that uncommon bond. I really like that they're staying involved with the CF, and I think they were glad that I'll stay involved carrying the baton for Madison. Below, a picture of Josh Sommer, and one with Madison and Josh at the 2006 Chordoma Community conference in Boston.
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My friend Maureen lost her daughter teenage daughter Angela to chordoma: To quote her: "don't let this be a story to never speak of again, let it be the beginning of a beautiful one." Angela's wanted that.
