Let’s See More ALS Advocacy

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The surge in awareness we saw from the Ice Bucket Challenge helped us to make great strides in ALS advocacy. From new policies to help with care and support for families impacted by the disease, to tremendous increases in governmental funding for ALS research, we’ve seen great progress.

But we still have work to do and need your help.

Before the Challenge, government funding and support for ALS research and care were not given the same priority as others in the disease space such as cancer or heart disease. We saw minimal increase and growth in attention and annual budget spending on the federal level with even less on state levels.

Since then, however, with the help of advocates nationwide, we’ve been able to make significant progress and impact for the ALS community.

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Katie-Advocacy

We’ve speeded the discovery of new treatments for people living with ALS through more clinical trials and expanded access to investigational drugs by passing the ACT for ALS Act, a tremendous win.  

We were also able to eliminate the two-year waiting period before people living with ALS receive Medicare benefits due to disability, an issue that became a priority when it was first introduced in 2016, recognizing the incredible financial stress the community bears with an ALS diagnosis. ALS advocates reached out to members of Congress more than 54,000 times to build support for the bill, including during in-person meetings in Washington, D.C.  

We’ve lead efforts to create and secure funding for the National ALS Registry and Biorepository, a Centers for Disease Control and Prevention database of people living with ALS and biological samples that helps scientists understand the disease and its causes. 

Federal appropriations for ALS research has just gone through the roof and has elevated our understanding of not just some of the risk factors of ALS, but some of the biological causes of ALS.”
Melanie Lendnal
ALS Association Senior Vice President of Policy and Advocacy

We’ve fought to increase federal funding from $20 to $40 million at the Department of Defense ALS Research Program, and from $83 million to more than $100 million at the National Institutes of Health for research to find new treatments and a cure for ALS. In fact, over the last ten years, we’ve been able to increase NIH funding to more than $160 million, an increase of over 190%. 

We also achieved unprecedented success in our fight for state appropriations last year, securing funding for ALS care services, clinics, and research. Thanks to the tireless efforts of our advocates, we secured more than $20 Million from 15 states including Alabama, California, Florida, Indiana, Maryland, Minnesota, Missouri, New Jersey, New Mexico, New York, Ohio, Pennsylvania, South Carolina, Tennessee, and Virginia. 

“All of these amazing wins could not have been possible were it not for the Ice Bucket Challenge,” says Melanie, but so much more still needs to be done. 

One of the things I think that a lot of people forget is that everyone who is a decision maker in our government, whether it's local, state, or federal, almost all of them are elected officials. That means they work for us. That also means that every single person in this country has a voice and has a right to tell those officials what they want.”
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Brett and Jeannine Schoenecker

When asked what advice she would give to someone in the community who wants to get involved, Melanie said, “My message to people living with ALS, to advocates, to anyone in the ALS community, is do not hesitate to use your voice, however it is comfortable for you. Whether it's an email, whether it's a phone call, whether it's showing up at the office of your member of Congress, on the Hill, in district, your state governor, whatever the case is, use your voice because your voice has power.” 

We still need more advocacy. 
We still need a cure. 
Let’s see it end. 

To learn more about how you can get involved and become an ALS advocate today, visit our website here.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.  

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Comments

Submitted by: Lisa J. on Tue, 07/23/2024

Having the familiar ALS gene in our family and seeing uncles, aunts, cousins and the hardest of all, my father , die from this terrible illness makes finding a cure that more important.

Submitted by: Stephanie O. on Tue, 07/23/2024

Lisa, we are so sorry for the losses in your family due to ALS. We are all fighting for a cure!

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