Bringing About Real Change Step-by-Step: What it Means to Be an ALS Advocate

With the 2020 election looming, it seems every other ad highlights a different elected official in either a positive or negative light. But when we look beyond the talking points that dominate our screens, we often find that elected officials at the federal, state, and local level are not only open to, but eager to hear the thoughts of the constituents they are elected by. By becoming an ALS advocate today, you can make your thoughts known to your elected leaders and advocate for changes in laws and regulations that affect thousands of people living with ALS and their families.

Each June, at the National ALS Advocacy Conference, hundreds of ALS advocates from across the country come together to advance public policies that will benefit people living with ALS and their families. This past June, the conference was held virtually due to the COVID-19 pandemic. It was still an incredible event, but ALS advocacy is not a once-a-year effort. It is more than a visit to Capitol Hill or a video call with a senator—it is every member of our ALS community coming together to effect real change for families affected by this disease.

“What’s nice about signing up to be an advocate is that our national ALS Association office makes it so easy,” says Anna Zelinske, our Chapter’s Director of Programs and Services for Patient Care. “Often all you have to do is click on a few buttons and a letter gets sent to your representative, or to have your name added to a petition. A person can be as little or as much involved as they have the time and capacity for and still be a part of our collective advocacy.”

The first step for our advocates is to register online at the ALS Association Advocacy Action Center. This quick registration is a great way to get updates from the ALS Association when we most need our advocates to mobilize on an important issue. A few button-clicks later, and your voice is added to those also dedicated making a difference for people with ALS.

Ashley Smith is one such voice. “I knew that I could make a difference on a day-to-day basis. There is an impact on the everyday life of individuals struggling with this disease,” says Smith, the ALS Association’s Associate Director of Grassroots Advocacy, on her choice to join in the ALS Association’s national advocacy work.

The work of our advocates has resulted in policies that not only advance the search for treatments and a cure, but has also helped to ensure that people living with ALS have access to the healthcare they need and deserve to maintain a higher quality of life. Some significant accomplishments include:

  • Eliminating the 2 year waiting period before people with ALS receive Medicare benefits due to disability.
  • Increasing federal funding from $10 to $20 million at the Department of Defense ALS Research Program and from $83 million to $111 million at the National Institutes of Health between fiscal years 2018 to 2020 for research to find treatments and a cure for ALS.
  • Leading efforts to create and secure funding for the National ALS Registry and Biorepository, a Centers for Disease Control and Prevention database of people with ALS and biological samples that helps scientists understand the disease and its causes.
  • Implementing historic regulations at the Department of Veterans Affairs designating ALS as a service-connected disease, ensuring that veterans with ALS and their survivors have access to VA benefits, including health care and disability benefits.

“When facing a disease like ALS, a person has lost much of what we all cherish so much, the power to control our own bodies. Before ALS, a person is able to move how they want, scratch their own nose, eat the food they choose, and use their voices to speak,” says Zelinske, “When ALS takes these things away, individual and systems advocacy can give a person a renewed sense of power as they use their collective voice to make change not just for their own experience, but for all of those who face ALS.”

Click here to learn more about our Chapter’s advocacy work and join our community of ALS advocates. Together, we will create a world without ALS.

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