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Q&A on ALS

September 5, 2014
Senator Chuck Grassley , Dysart Reporter

Q: What is ALS?

A: Some people may know the neurodegenerative disease by another name, Lou Gehrig's disease. ALS stands for amyotrophic lateral sclerosis. To the tens of thousands of American families impacted by this progressive, debilitating disease, the diagnosis is devastating. The incurable disease disrupts nerve cells in the brain and spinal cord, leading to paralysis and loss of life. Patients will have different symptoms on different timelines, such as the loss of mobility and the ability to speak, swallow and breathe. Like so many families facing a debilitating illness and life-threatening disease, advocacy for cures and treatments becomes a driving force that brings people together to build public awareness and raise money for research, medical care and support for caregivers. ALS is no different. In fact, just such an effort has caused quite a splash this summer. The so-called Ice Bucket Challenge has evolved into a social media sensation. Organizers say nearly $80 million has been raised in the eight weeks since the challenge went viral. It's good to see more people becoming engaged and educated about diseases that cause pain and suffering for so many in our society. For the families, caregivers, patients and victims of this and other incurable diseases, the increased attention and awareness are welcome signs. It means more people are empathizing with the heartbreak and hardship that comes with a medical diagnosis that so far has no cure. That will help marshal resources and solidarity for Americans diagnosed with incurable diseases.

Q: What is done at the federal level to help advance medical research?

A: Constituents frequently contact my office about devastating illnesses and diseases that affect their loved ones. These families understandably want more resources directed towards finding treatments and cures. In 2013, the National Institutes of Health financed 237 areas of disease research, spending more than $30 billion on medical research. The taxpaying public deserves to know every tax dollar assigned to medical research is spent prudently, not funded and forgotten. And those families who so urgently hope for medical breakthroughs deserve to know that every dollar, from public funds to tax-advantaged donations, is spent effectively and efficiently. At the policymaking tables in Washington, I support federal funding for medical research. In addition, through relentless congressional oversight, I work to make sure that dollars allocated through the federal spending process or subsidized through the federal tax code are spent as intended. That includes holding federal grant recipients and nonprofits accountable to the public mission they are serving. Protecting the integrity of scarce resources and insisting on sound fiscal stewardship will stretch research dollars and enhance the public trust. Grabbing the public's attention with the splashy Ice Bucket Challenge created a watershed moment. It will likely encourage other patient advocacy groups to build on the momentum to win more public awareness. That's good news. As they open their wallets, donors should look for good governance, both from the organizations that receive their donations and the federal government as it funds medical research. From my leadership position in the U.S. Senate, scrutinizing federal spending to squeeze the most value from every dollar will always be on my bucket list of priorities.



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