May is ALS Awareness Month and, sorrowfully, the Trump administration proposes to halt scientific research funding for this disease and many others.

Over four years ago, my husband Chris passed away from ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease. While the progression of symptoms differs for each individual, Chris first lost his ability to speak, give a kiss goodnight, eat, drink and swallow, and finally began losing motor skills in his hands, arms, feet and legs. He passed away two years after the diagnosis of ALS.

While their minds remain sharp, people with ALS often rely entirely on caregivers, and in advanced stages, round-the-clock care becomes essential. It is a devastating disease and there is no cure for ALS.

There is important medical research on ALS taking place at numerous scientific institutions across the country, and one is the MDI Biological Laboratory (MDIBL) in Bar Harbor.

Recently, Hermann Haller, MD, president of MDIBL, told members of the U.S. Senate Appropriations Committee that sustained federal support is the bedrock of the nation’s leadership of biomedical discovery and the global bioscience economy. Haller was invited to the hearing, titled “Biomedical Research: Keeping America’s Edge in Innovation,” by Sen. Susan Collins of Maine, who chairs the powerful committee. It comes at a time when federal research funding is at risk of substantial reductions.

Collins critiqued recent federal actions and proposals that could negatively affect the resources needed to advance the country’s biomedical prowess. During the hearing, Collins asked Haller what would be the effect of a proposed reduction in support for operational expenses that the National Institutes of Health (NIH) awards to supplement direct research. Dr. Haller explained that independent research institutions like MDIBL, without a large endowment and without revenues from tuition, are dependent on the present system of indirect cost reimbursement to support the nuts and bolts of scientific research in laboratory settings.

Asked by Sen. Lisa Murkowski of Alaska how cuts in research funding could affect the search for treatments for specific diseases such as ALS, Haller cited the experience of MDIBL investigator Emily Spaulding, Ph.D.

A Maine native, Spaulding recently established her first research group at MDI Bio Lab, where she is uncovering the molecular mechanics of degenerative diseases such as ALS. Spaulding has waited seven months for the NIH to act on the next competitive grant she has applied for, an award that will keep the research going. “She’s driven by a desire to make contributions to understanding ALS,” Haller said. “But at certain points of her career, she needs federal support, she needs this continuity.”

“For nearly a century, the United States has led the world in biomedical innovation, thanks to far-sighted federal investments — in gifted thinkers, bold ideas and the infrastructure that allows science to thrive,” Haller said. “That commitment has made the U.S. an irresistible magnet for researchers like me, who seek out the best resources, colleagues and students.”

Researchers such as Dr. Spaulding hold the key to finding a cure for ALS and many other now-incurable diseases.

I thank Sen. Collins for holding this Senate Appropriations hearing and implore Congress to sustain federal funding support for medical research that not only can, in the future, save the lives of individuals such as Chris, but grow the intellectual and economic strength of the United States.