NIH saves lives, in Alaska and nationally. Research on my genetic condition shows how.

Yahoo

27-02-2025

A National Institutes of Health Pediatric Oncology Branch researcher's lab jacket is seen in an undated photo. The NIH consists of 27 different centers and institutes that each focus on health challenges facing Americans. (Photo credit: NIH)
About eight years ago, I was diagnosed with Hereditary Leiomyoma and Renal Cell Cancer Syndrome. HLRCC is a genetic condition that causes, among other things, skin lesions, uterine fibroids and a very aggressive form of kidney cancer.
The syndrome was discovered by the National Institute of Health in the early 2000s. By studying families, NIH researchers were able to identify the genetic mutation that causes the syndrome. This led to a regimen of screening to catch the cancer early, and an understanding that even tiny tumors metastasize and spread quickly — this isn't a 'wait and see' cancer.
The NIH gave those of us who carry the gene a fighting chance. Every year, I travel from Alaska to Washington, D.C., to meet with researchers who are still working to crack the code on HLRCC. There are several hundred families who carry the gene, and in the scheme of things, it might not seem worth it to put resources into keeping us alive. I get it.
But here's the reality: The work at the NIH isn't just saving thousands of lives across hundreds of family lines. By studying this rare cancer, they've made groundbreaking discoveries that extend far beyond HLRCC. Just this study has changed our understanding of cancer, improved genetic detection technology, led to the development of precision medicine therapies to treat aggressive cancers, and made diagnostic tools like the MRI better at detecting cancer.
Outside of the medical and chronic illness community, maybe it's not well known that the NIH is behind most ground-breaking medical discoveries. When your spouse, parent, friend, neighbor or child ends up with a life-threatening illness and your doctor says, 'This is serious but luckily treatment has gotten so much better,' it's most likely gotten better because of research done by the NIH. If traditional treatments aren't working and your doctor says, 'but hang onto hope because there's a new treatment that is showing promise,' most likely that new treatment was developed in collaboration with the NIH.
The Trump administration has thrown the NIH into chaos; I don't know if the research for HLRCC will continue. I doubt that I will still be able to travel for screening. And most disturbingly, I don't know what these actions mean for the people who are there in an active battle against cancer. But I do know that the progress being made toward fighting these diseases will stop if the NIH isn't allowed to do their work.
Right now, there are so many institutions that are being dismantled that it's difficult to know where to put your focus, but it is not hyperbole to say that people will die because of what's happening at the NIH.
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