Building the Blocks of Congressional Action via ALS Advocacy—One Story at a Time

If you are an average American, you probably hold a low option of Congress. It has been more than 10 years since overall congressional approval ratings have inched above 30 percent, and during most of that time its rating has actually been somewhere below 20 percent. Among the reasons given for the lack of support is that “nothing gets done.”

But if you look beyond the hot button issues that dominate cable news, you often find that individual members of Congress and their staffs are not only open to, but eager to hear the thoughts of their constituents. They are, after all, elected by just these constituents, and listening to what they have to say is in a very real sense what they were elected to do.

As such, each June people with ALS, their families, and those who advocate for them gather in Washington, D.C., to learn about the latest ALS research, network, and visit Capitol Hill to share their stories with members of Congress and lay the groundwork for legislative victories. To be sure, the trip is not an easy one, especially for people with ALS. But many made the journey, and on Tuesday, June 11, the hallways of Capitol Hill were full with those advocating for people with ALS. In all, members of the ALS Association St. Louis Regional Chapter, Chapter board members, and local residents with ALS met with the offices of 11 representatives or senators from Missouri and Illinois.

During these visits they asked for support for the ALS Association’s legislative priorities, including increased funding for research and drug trials. But certainly as important was the chance to share the stories of the people living with ALS in their states and districts.

Illinois ALS Advocates

One of these people is Pattie Hamlin. A mother and grandmother from Kokomis, Illinois, Pattie was diagnosed with ALS in September 2016. “My family depends on me just like every other family depends on their mother and grandmother. I don’t get the joy of holding my grandchildren and I won’t get the joy of seeing them grow up,” Pattie says. “There are medications on the horizon and I would hope to see more funding going to the development of those medications. I would also like to see the length of medical trials shortened so that we have a chance to use the medications they find.”

Another is Sandi Troup. An Air Force veteran, wife and mother from Rolla, Missouri, Sandi was diagnosed with ALS in January 2018. Veterans are two times more likely to develop ALS than the general population. “ALS can progress so fast and is so expensive, the wait for benefits can be devastating, especially for those who don’t have access to veterans benefits like I do,” Sandi says. “Measures to support quality of life for persons with ALS as well as their caregivers are also extremely important, including benefits such as in-home care.”

Missouri ALS Advocates

Scott Lato is from Byrnes Mill, Missouri. Just diagnosed in March of this year, Scott is one of the 5 to 10 percent of ALS cases that are familial, being passed down from family lineage. However, it is very likely that genetics contribute, directly or indirectly, to a much larger percentage of ALS cases. In the last two years ALS researchers have identified five genes associated with ALS, but much more work still needs to be done.

These are just a few of the stories ALS advocates from the St. Louis region and others from around the country shared with senators, representatives and staff. What legislative victories they might lead to is hard to say. Politics is unpredictable. But if we are someday to have a world without ALS, these messages and legislation and funding they will one day help secure will have been part of the solution. That, at least, is something we can all approve of.

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