Congressman Chris Collins, along with local medical experts and families living with rare diseases, urged members of the U.S. Senate to pass legislation that boosts funds for research.
Known as the 21st Century Cures Act, the bill boosts funding by $8.75 billion over the next five years. The money would be distributed through competitive grants by the National Institutes of Health, an authority that University at Buffalo researchers say has allowed them to accomplish a lot.
"UB is preparing the next generation of scientists who will make the discoveries and breakthroughs that improve our society," said Dr. Venu Govidaraju, Vice President of Research and Economic Development at UB. "The investments from this bill would allow the NIH to support thousands more researchers across the country, in their efforts to advance discovery and innovation to find new treatments and cures for diseases."
Among those speaking on behalf of families living with diseases was Colleen Marchetta. Her son was diagnosed with an autoimmune disease known as Juvenile Dermatomyositis. It's so rare, there are only three known cases of it in Western New York.
"The problem with it being so rare is there's no money," Marchetta said. "So, obviously, we are 100 percent behind this bill. I'd love to see it pass the Senate, get signed by the president, so we can work on a cure."
Congressman Collins pointed out that a House subcommittee on which he sits passed the 21st Century Cures Act unanimously, 51-0. He is urging the Senate to pass legislation with a similar spirit of bipartisan support.
"Many of these dollars are going, and we've actually within this bill expressed the desire that they're going, into the orphan diseases, the diseases that currently don't have meaningful treatments," Collins said.
The Congressman noted that even lawmakers who support smaller government, like he does, appreciate the responsibility of the government to support life-saving research that this legislation would help fund.