Raising funds for and awareness of a relatively obscure disease is a difficult task, so this summer’s Ice Bucket Challenge, which has generated more than $110 million to fight ALS, is a tremendous boon to anyone touched by amyotrophic lateral sclerosis, a cruel, fatal disorder that slowly paralyzes its victims.

While it’s heartwarming to watch people of all ages gleefully getting an icy dunking for a good cause, Congress hasn’t been nearly as generous to researchers. In fact, because of across-the-board federal spending reductions, the budget for the National Institutes of Health — the world’s largest funder of biomedical studies — has tumbled since 2010. By slashing research funding, lawmakers are throwing cold water on the chances of discoveries that drive life-saving medical treatments.

The life expectancy of someone with ALS averages two to five years from the time they’re diagnosed. There is no effective treatment for the disease. Nobody knows what causes it or how it can be prevented.

Given these facts, it’s tragic that support for ALS research has fallen from a peak of $59 million in fiscal 2010 to $39 million in fiscal 2014. In the same period of time, the budget for the National Institutes of Health has fallen by more than $1 billion, to about $30 billion.

Austerity measures, including congressional budget cutbacks approved in 2011 to force a deficit-reduction deal, have created a shortfall in biomedical research funding that will be hard to make up.

“Currently, the NIH budget in real dollars (offset for inflation) is at the same level as it was in 2003,” Dr. Jonathan Serody, who conducts bone-marrow transplant research at the University of North Carolina, noted in a commentary for the Raleigh News & Observer. (A Congressional Research Service fact sheet backs up his statement.)

The work backed by the NIH has changed our lives. A child born in the United States in 1929 could be expected to live until the age of 57; a child born in 2009 could be expected to live until the age of 78. One reason for the increase in life expectancy? NIH support of research into ways to prevent and treat illnesses such as flu, tuberculosis and gastrointestinal infections that once killed tens of thousands of people.

By embracing the Ice Bucket Challenge, Americans have shown their support for efforts to eliminate a devastating disease. Private donations, however, can do only so much, and Congress should step up to ensure that scientists have sustainable government backing for their critical work.

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