The Fight Never Stops—ALS Advocates Push for Increased Funding from 117th Congress

Even with all the headline-grabbing stories that dominate cable news and your news feed, much of what happens in the federal government follows a predictable pattern. This seemingly mundane work of setting priorities, planning budgets, and allocating funds doesn’t tend to excite many journalists unless something goes awry, but when all is said and done this process determines how most of your tax dollars get spend, and on what.

And so it is with the annual appropriations process that provides funding for key government programs. While other flashy topics attract more attention, the ALS Association and our network of ALS advocates are working to protect and expand federal funding for ALS research and fighting for public policies that will accelerate the search for treatments, and a cure. Just this week, a “Dear Colleague” letter has begun circulating in the U.S. House of Representatives, asking members to signal their support for the funding requested in the fight against ALS.

This year, The ALS advocates are focused on new and increased investments in research to find treatments and a cure, slow symptom progression, reduce the number of new cases, and increase the length and quality of life for every American living with ALS. These priorities include:

National Institutes of Health (NIH): If we are going to defeat ALS, we need the best scientists in the world pursuing the most promising leads. As such, we are calling for increased funding to at least $130 million for ALS research at NIH to attract the next generation of neuroscientists, accelerate discovery and development of new treatments and increase the number of ALS clinical trials.

Department of Defense (DOD) ALS Research: As we have learned, people who served in the military are up to twice as likely to develop ALS, meaning DOD funding is vital to the ALS community. Congress should increase funding to at least $60 million for the DOD ALS Research Program to fund clinical trials to pull through promising preclinical research and human studies into ALS drug development.

Federal Drug Administration (FDA): The more clinical trials for ALS that are undertaken, the more likely we are to find breakthrough treatments.With the goal of increasing clinical trials, we are calling for at least $50 million for the Orphan Products Grants Program at FDA to fund research to expedite product development, foster innovative trial designs, and enable natural history studies to better understand the disease progression and pathology.

National ALS Registry and Biorepository: Much has already been learned from ALS Registry, but the more we can continue to grow the registry, the more valuable it will become. Congress should provide at least $10 million for this program at CDC to help researchers identify candidates for clinical trials, identify risk factors for ALS and collect biological samples that will aid the search for treatments and a cure.

Study to End ALS – National Academies of Sciences, Engineering, and Medicine (NASEM): We are calling for $1 million to commission a NASEM study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS. Such a study would provide the government and all stakeholders with a blueprint to achieve this goal.

To be sure, ALS advocates aren’t alone in wanting significant funding from these agencies, but the success the ALS Association and ALS advocates have had in securing funding the last few years shows that Congress has been motivated by the passion of the ALS community and the unified voice we speak with when requesting Congress to act. Now that we have their attention we must continue to keep the needs of the ALS community front-and-center. If you have not already, sign up now to be an ALS Advocate and help the ALS community make the case for significant investments from this Congress. With your help, we can drastically accelerate the fight against ALS this year and in the future, because we can’t wait for the next breakthrough.

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