Jessica Chaikof and her older sister, Rachel, were both born deaf. At the time, the family didn't know exactly why. The girls began using cochlear implants and carried on.
"And so we pretty much lived our lives normally," Chaikof says.
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.
"My mom didn't want to scare me, but they knew if Rachel had it, I have to have it too because it's genetic," she recalls.
Chaikof's now 30 years old, and a Ph.D. student at Brandeis University in the social policy program, where she focuses on disability and higher education policy. And she gets around, especially at night, with the help of a guide dog — a yellow Lab named Jigg.
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.
"I don't want to go blind," Chaikof says. "And so that progression is really scary, especially when I see the cuts by the Trump administration on research funding."
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.
"I get really angry because the Trump administration claims they're protecting us. They're not," says Chaikof. "They're actively harming us. Especially when you're attacking funds for Ashkenazi Jews, Jewish diseases."
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.
"And it was really meeting the two daughters and seeing how well they're bearing up with the challenges of the disease that we said, 'You know, we might be able to contribute something here. If we don't, who else is going to do it?'" Corey says.
They now have a good understanding of the protein that's defective in patients with Usher 1F, Corey says.
"Because we know so much about it, we could design strategies to deliver a normal copy of this protein, first to the inner ear and then to the retina," he says.
It's going to take more research before they're ready to begin human trials of a gene therapy that could fix that protein in patients, Corey says.
There are no existing grants to Harvard pertaining specifically to Usher 1F — and so the cancellations haven't yet directly impacted the research — but Corey says he has two grant applications submitted to the National Institutes of Health — and he's not optimistic about their approval.
"But even if they are scored very highly by a review committee, it's unlikely that those grants would ever be awarded to Harvard," he says. "That will really slow down the research."
Already, some of his research has come to a halt. Corey had an NIH grant terminated that was supporting basic science into the genetic mechanism of hearing.
The NIH did not respond to a request for comment.
"To be at the verge of developing therapies finally for some diseases that we could only diagnose for decades and then to have the rug pulled out from under us — for the whole scientific enterprise, not just Harvard — is really discouraging," Corey says.
Even so, Corey said he's optimistic Harvard's lawsuit challenging the federal funding freeze will be successful. He says when that happens, his grant applications will be there, ready for funding.
Jessica Chaikoff is hoping he's right. She's confident gene therapies could work.
"And that's the case, not just for my disease, but for any rare disease," Chaikof says.
As long, she says, as the federal funding is available.
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