Dr. Francis Collins

Dr. Francis Collins, Director of the National Institutes of Health, will keynote this weekend’s Champions for Change Gala. How Dr. Collins learned of The ChadTough Foundation is an interesting story he shared on Wednesday in an interview with Frank Beckmann on WJR.

“I have a Michigan set of roots,” he said. “I was there on the faculty at the University back in 1984-1993 and my daughter lives in Tecumseh. My granddaughter Bailey Fraker, hearing about ChadTough, got together some of her friends in school and they knitted a whole bunch of scarves and sold them to raise money for the ChadTough Foundation.

“She didn’t even know that this was something her granddad was working on back here at NIH until after the fact. And so Saturday night when I get to be there, and it will be a very emotional evening, the person that is going to introduce me is my 13-year-old granddaughter.”

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In addition to talking about The ChadTough Foundation, Dr. Collins touched on the state of DIPG research.

“We didn’t know anything about DIPG until a couple of years ago,” he said. “Advances now that allow us to look at the cells in these tumors and ask exactly what is causing them to grow means that you can look at their DNA, you can look at their instruction book and you can figure out what glitch has happened that’s sending a signal to those cells that you want to try to stop.”

Because of families like the Carrs who have donated their child’s tissue, cell lines are being generated to teach researchers more about what drives these tumors.

“It turns out that about 80-percent of these DIPG tumors have the same mutation,” said Dr. Collins. “Not that they were born with it, it happens sometime early during development, and it’s very puzzling and challenging but at least we know it now.

“It’s a mutation that basically changes the way in which many genes in that cell are turned on or off. We talk about these days not just genetics, which is the DNA, but epigenetics, which is the things that control which genes are on or off. And in DIPG it’s a mutation that changes the epigenetics of the cell and that was a pretty dramatic discovery just in the space of the last couple of years.”

Listen to Dr. Collins’ full interview with Frank Beckmann: