Opinion: Listen: A father describes the legacy of his son’s ultra-rare disease

Bertrand Might was born with a rare disease that had never before been diagnosed, an odyssey that took four grueling years. He was 12 years old when he died last year — almost a decade older than physicians predicted he would live. This week on the “First Opinion Podcast,” Bertrand’s father, computer scientist Matthew Might, talks about how he used his coding skills to try to extend his son’s life, and how daring research projects focused on rare diseases could save lives of people with rare and common diseases across the country and around the world if the Biden administration’s proposed Advanced Research Projects Agency for Health (ARPA-H) comes to life.

“To watch your child suffer and feel like there’s nothing you can do — I think it’s the worst feeling, at least the worst I’ve ever experienced,” said Might, who directs the Hugh Kaul Precision Medicine Institute at the University of Alabama at Birmingham. “And I think it pushed me into learning the genetics and it pushed me into learning how to think about looking for therapies.”

The conversation stems from Might’s First Opinion essay, “Scientific, moral imperatives underlie including rare disorders in the ARPA-H mandate.

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Source: STAT