Sunday, April 21, 2024

a touching story and song

I'm so touched by this month's Atlantic article about a breakthrough in cystic fibrosis treatment

In the fall of 2019, Trikafta was approved by the FDA just 10 days before a large annual gathering of CF experts in Nashville. Doctors who attended told me the atmosphere was electric. Jenny happened to be there to speak on an unrelated panel, and she remembers seeing the geneticist Francis Collins walk onstage with a guitar. Collins is best known as the longtime director of the National Institutes of Health, where he oversaw the sequencing of the human genome in the ’90s (he has since retired from the NIH). But he had made his name in 1989 as one of the scientists who discovered the gene for cystic fibrosis. 

In those long years when progress was halting, Collins, who is also an amateur musician, wrote a song to inspire a gathering of CF researchers. He sang “Dare to Dream” again that day in Nashville, his baritone raspier with age. When he got to the verse that he had rewritten for this occasion—“That triple treatment has taken 30 years”—cheers broke out in the convention center. In the crowd were people who had waited their whole career, even their whole life, for this moment. We dare to dream, dare to dream. As they swayed to the music, perhaps no one quite understood the magnitude and velocity of the change to come.

It's adorable watching the NIH director singing the song he wrote. I went back and also watched the 2009 version he sang at the 20-year anniversary of isolating the gene, before they found this breakthrough treatment. 

He is very inspiring! Also he's good at enunciating clearly while singing.

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