Jessica Chaikof, born deaf and diagnosed with Usher syndrome, fears losing her sight due to funding cuts affecting gene therapy research. Her sister's diagnosis led to her own realization of the genetic nature of their condition. As a Ph.D. student, Chaikof emphasizes the importance of federal funding for research, especially in light of a recent ruling that restored some NIH grants yet left out critical funding for Harvard. The cuts under the Trump administration raise concerns about the future of therapies for conditions like Usher syndrome, which affects a small number of infants each year.
Chaikof expresses her concern, stating, "I don't want to go blind. And so that progression is really scary, especially when I see the cuts by the Trump administration on research funding."
Jessica Chaikof, now a Ph.D. student at Brandeis, focuses on disability in higher education and hopes gene therapies can halt her vision deterioration.
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