From the day that I was first diagnosed with ALS, I did not want to sit by passively waiting as ALS took its toll on my body. I am fully aware that currently there is nothing available to change the progression of this disease, short of delaying the inevitable by a few months. Today’s reality doesn’t mean that the future has to be that way for patients with ALS. Science has eradicated or at least found treatments for countless diseases in my lifetime. My only question was, what can one person do that can make a difference?
I was fortunate enough to be selected for a clinical trial shortly after diagnosis which allowed me to feel as if I am doing something proactive to help find a treatment, or better yet a cure. Raising awareness of ALS through advocacy with Congress, seemed like a way I could do even more to take an active role in this fight.
When I decided to sign up to become an advocate, I wasn’t sure what that would entail. As always, Lisa Bruening and the Northern Ohio ALS Association made it easy. Lisa did the heavy lifting and moderated the meetings with our elected Representative’s staffers. All I had to do was tell my ALS story. Most of us have repeatedly told our stories to family and friends so many times that we can recite it by heart. All I had to do was take a few minutes to familiarize myself with the key funding planks so that I could weave them into my story.
I was able to share my story with both Julia Rossman, Health and Legislative aid for Representative Shontel Brown, and Max Siwik who is the Health and Legislative aid for Representative Anthony Gonzalez. I found both Julia and Max to be empathetic and supportive of pALS and their caregivers. I am confident that they will champion the cause with with our congressmen who can really make a difference!
If you get the chance and are able to advocate, I definitely found it rewarding to take a few minutes of my time to help our Representatives put a face and a story with such an important cause as they fight for a better future for ALS patients!
By Paul Kronick, an ALS advocate who is currently living with ALS. We call people like Paul an ALS Hero!
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