She hoped key research could help save her eyesight. Then the Trump funding cuts came (NPR)
By Craig LeMoult
Published June 24, 2025 at 4:00 AM PDT
LISTEN • 4:18 (don't know how to copy this as a link)
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But in 2006, when Chaikof was 11 years old, her older sister started having vision problems and was diagnosed with Usher syndrome Type 1F. It's a rare genetic disorder that causes deafness at birth, and then, over time, blindness.
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Chaikof is hoping research into gene therapies could someday stop or even reverse the deterioration of her vision. But she worries that cuts to federal research funding — especially at Harvard — could mean that therapy won't be ready in time to save her sight.
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A federal judge's ruling this week that funding should be restored for about 800 terminated NIH grants does not include the widespread cancellation of grants at Harvard University. This means that more than a billion dollars from the National Institutes of Health and National Science Foundation that were awarded to Harvard but have not yet been spent are now unavailable.
The Trump administration has said the termination of Harvard's grants are in part because of what it sees as the university's failure to address antisemitism on campus. Usher 1F, which is thought to affect somewhere around 10 to 20 infants born in the U.S. each year, is particularly prevalent in people descended from Ashkenazi Jewish populations.
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Chaikof's parents run a foundation called the Usher 1F Collaborative, which is dedicated to supporting the development of gene therapies for Usher 1F. In 2017, Dr. David Corey, a Harvard scientist who'd been studying the protein that's affected in these patients, met Jessica and her sister at a conference hosted by the foundation.
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quite a bit more: https://www.kcsm.org/npr-news/2025-06-24/she-hoped-key-research-could-help-save-her-eyesight-then-the-trump-funding-cuts-came