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.
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.
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.