Our Mom, Carol Ann Paul, was diagnosed with ALS on September 25, 2012. Her diagnosis came after roughly three years of watching her decline without explanation. It started with numbness in her hands, then difficulty walking, which soon turned to falling and a multitude of complications that come from that.
Her ALS diagnosis was a double edge sword; we finally had an answer, but we had an answer that was nothing short of terrifying. What made it more difficult is that Mom was a biologist, teacher and scholar with a deep understanding of what the diagnosis meant for her. It was soon after Mom’s formal diagnosis that our family was fortunate to come into contact with Project A.L.S.; Meredith, Valerie and Erin who took us under their wings. They helped comfort us and navigate through what was surely the most challenging few months our family ever had to face. Mom lost her courageous battle with ALS on May 14, 2013 at the age of 76.
It was in honor of Mom’s battle that CAPS KIDS was born. The team consists of three of her children, Christine, Dana and Stephanie and Christine’s husband Ray. We participated in the 2013 NYC marathon in Mom’s honor. We guess that wasn’t enough because here we are again ready to line up on the Verrazano Narrows Bridge on November 2 to complete the marathon in her memory once again. While she left us on earth, her spirit continues to beat in our hearts and her strength permeates our bodies as we train, fundraise and work to complete this extraordinary event.
Supporting Project A.L.S.’s commitment to funding research is truly the most fitting way that we can honor our Mother. As a scientist she understood the critical need to keep searching for a cure so that, one day, we can remember ALS as a relic like Polio. Until that day comes we will continue to remember our Mother and support Project A.L.S. No individual and no family should have to struggle with this horrific and unforgiving disease.
Read more about CAPS KIDS, and support if you’re so moved, here!