As a child, Phoebe Marshall suffered from a constellation of confusing and debilitating symptoms: ankle pain, vision problems, liver inflammation. Her mother, Sarah Marshall, took her to just about every kind of medical specialist in their home state of Minnesota, none of whom could accurately diagnose her mysterious disease.

Hospitalizations and surgeries left Phoebe so weak she couldn’t get out of bed for days at a time. They flew to Boston in desperation. It took 12 years and the work of scientists from all corners of the country — supported by a network with nearly $18 million in funding from the National Institutes of Health — for the Marshalls to get the answer they so desperately sought.

Nearly $7 million of that grant money is now suspended, a victim of federal cuts targeting Har

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