ALS Advocacy: Why It’s Important and What You Can Do to Make a Difference

An important part of our mission at the ALS Association is to advocate for changes in laws and regulations that affect thousands of people living with ALS and their families. ALS advocacy 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.  ALS advocates from around the country have been instrumental in passing legislation that expanded veteran’s benefits, increased national data collection through the ALS Registry, and improved insurance and disability coverage for people with ALS.  More than $950 million in federal funding has been generated for ALS-specific research since 1998.

Advocacy is especially important now because of the many legislative changes being proposed to healthcare, social assistance, and other areas that impact the lives of people who are living with ALS. Many legislators don’t know about the experiences of someone who is living with ALS or how the disease can impact a family.  That’s why your involvement is crucial – as an advocate, you can help educate the decision-makers who are making determinations about the lives of people with ALS.

Not sure where to start? There’s no special training needed; most of what a good advocate does is intuitive and grows out of a few basic principles.  Here are a few tips to help you change the laws and policies for people affected by ALS:

Do your research.
Visit the House of Representatives websitethe U.S. Senate website,  the Centers for Medicare and Medicaid Services, check out The ALS Association’s Advocacy Action Center, or use digital tools and apps like Countable for policy updates and to track legislation. Learn more about the issues affecting you and your family.

Write, email or call your legislator.
Express your feelings about the issue; use your own words and include your personal experience. Speak or write from the heart, and ask for a response. One personal story can change a person’s mind and heart.

Utilize the media.
Write a letter to the editor of your community newspaper or contact your local anchor. Post something to your social media accounts and spread the word that help is needed on behalf of people battling ALS.

Sign up to become an advocate on our Chapter website, Join a community of advocates who have realized significant accomplishments in our nation’s capital through active participation in the process.

Contact our office at 314-432-7257 or by email at We will be happy to help guide you and answer any questions you might have about ALS advocacy.

By continuing to share the ALS story with legislators and putting a face on this disease, advocates can advance legislative and regulatory changes that affect families living day to day with an ALS diagnosis. Decision-making centers around you, the voters. At some point in the legislative process, there will be one letter or one call that breaks the camel’s back and affects change. Make your voice heard and make a difference for people with ALS.

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