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In January 2016, I was diagnosed with a rare form of ALS called Primary Lateral Sclerosis (PLS). Since then, I have become very active in research and am an advocate for my local ALS Chapter, The ALS Association of Greater Philadelphia. I am fortunate to be supported by my loving husband and our two wonderful sons. My form of ALS is slow progressing. Receiving Radicava infusions, I feel, are helping with my slow progression. If you could say you’re “lucky” when receiving this diagnosis then I wish for everyone to feel the same way I did when hearing my progression is slow. Which is why I participate in research to help further medical advances that will slow or halt progression for everyone diagnosed with this devastating disease. It’s why I advocate to my legislators and fight on behalf of my fellow PALs. I am committed to doing my part in whatever’s way I can. I believe there will be an end to ALS. I will not give up hope.
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