ALS patient fears NIH funding cuts could end life-saving treatment

By Jackson Kurtz

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    KANSAS CITY (KMBC) — Jennifer Robb, diagnosed with ALS, fears that President Donald Trump’s administration’s proposed National Institutes of Health funding cuts could end the clinical trial keeping her alive.

“You can wake up one day and no longer do something that you did yesterday,” Robb said.

In October 2024, Robb was diagnosed with ALS, a fatal disease that progressively destroys nerve cells and the spinal cord, weakening muscles until they cease to function.

“It’s a really horrific disease because of how it slowly paralyzes your body — and you’re aware of it every bit,” she added.

For Robb, a clinical trial has been a lifeline. As one of 200 patients receiving the treatment, she has seen a 57% increase in her life expectancy.

“It’s our one hope to live longer,” she said.

But that hope is now in jeopardy. The Trump administration’s plan to alter funding for the National Institutes of Health, which finances her trial, could bring the treatment to an abrupt halt.

“You just see hope going out the window. You feel like your life is over because it was the only thing that was helping you,” Robb said.

Despite the uncertainty, she remains committed to ALS advocacy, supporting others facing the same battle.

“You know that you’re going to die, but the fact that you’re going to now die so much sooner is really, really hard,” she said.

Her message to decision-makers considering funding cuts is simple: Put yourself in her shoes.

“It could be yourself, your spouse, your kids, your aunt, your uncle, your neighbor. I just … it wasn’t something I ever thought would be possible,” Robb said.

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