ALS Advocates Will Make Their Voices Heard

Tomorrow, more than five hundred advocates will gather on Capitol Hill in Washington, D.C. for National ALS Advocacy Day.  ALS advocates from all around the country will meet with members of Congress to share their stories and educate legislators about the importance of continued funding for ALS research and patient care.

Through the efforts of ALS Advocates,  more than $1 billion in federal funding has been generated for ALS-specific research since 1998. In fact, ALS Advocacy efforts have been responsible for many legislative victories, including securing veterans benefits, enacting the ALS Registry Act, appropriating funding for caregiver relief and the ALS Research Program at the Dept. of Defense, and passing the Medicare waiver.

One of those advocates who will be making her voice heard is Pattie Hamlin of Nokomis, Illinois. Pattie, who was diagnosed with ALS two years ago, and her husband Lester, will be participating in ALS Advocacy Day for the second year in a row.   She shared with us her thoughts on her role as an advocate for people with ALS:

“When I was diagnosed with ALS September 2016, the only experience my family and I had had with ALS was participating in the ALS Ice Bucket Challenge. To learn that I had a disease that would slowly lock me into my own body, was devastating. Depression hit hard. An ALS Association care services coordinator came to visit. She explained some of their services and asked what I needed. I told her many of my friends wanted to help me, but there was really nothing that they could do to help me at this point. She suggested that I ask them to sign letters to the congressman requesting continued funding for ALS research.

Somehow over the next week this just got me out of my funk. I started asking everybody I knew to sign the letters, I asked my friends to ask their friends to sign the letters. We ended up with about 3000 letters for each of my congressmen. A side benefit to this effort was that I was able to teach many people about the effects of ALS and the fact that there is no cure.

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Pattie with the more than 3,000 letters of support she collected to deliver to her legislators.

The ALS Association of St. Louis asked me later if I’d like to go with them to Washington DC to advocate directly to my legislators.  My husband and I went to Washington, D.C. that May, we were able to meet many people with ALS and their caregivers. It was a great experience to know others that were dealing with the same things that I was. In Washington we learned a lot more about what’s going on in the area of research for ALS.

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ALS Advocates visit Capitol Hill in 2017.

We spent one whole day on the Hill meeting with legislators or their representatives and explaining the importance of continued research. Many people don’t realize it but if you were in the military you’re twice as likely to be diagnosed with ALS as other people; this makes it even more important that we find a cure. My husband and I look forward to going back this year to meet up with the friends we made last year and to advocate for continued research in finding a cure.”

Even if you can’t be in Washington DC tomorrow, you can make your voice heard.  Help us send Congress a unified message that we will not stop until we have a cure for ALS – post, tweet, email or call your legislator and tell them to support people with ALS and their families! And visit our ALS Advocacy Action Center to learn more about our legislative priorities and how you can become a virtual advocate in support of legislation that advances the search for treatments and a cure.

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, www.alsa-stl.org. 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 advocacy@alsastl.org. 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.