Join Deena Ali as she swims, bicycles and runs through a series of races in 2018 in support of ALS research. The nonprofit Deena has chosen to support is A Long Swim (www.ALongSwim.org) Deena is an experienced and competitive triathlete, having completed all distances of the sport including 2 full Ironman-distance triathlons. Deena plans to compete in the Schaumburg Triathlon, ALS race, Steelhead 70.3 relay and the Chicago Half Marathon during the 2018 season, all of which will support ALS research.
A summer calendar of events like Deena’s would be a daunting weekend for any athlete, and Deena has some extra motivation. ALS is a disease that runs in Deena’s family, as she lost her grandmother, Sara (Shirley) Hunsicker, to ALS after a short battle with the disease. Through athletic circles, Deena had run into the family of Ellen Blakeman, who also died from ALS after being diagnosed with the disease for 12 years. Ellen Blakeman was committed to funding ALS research and finding a cure for this disease so other families wouldn’t have to go through the agony that her family has endured. Ellen’s commitment was so strong that she co-founded A Long Swim in 2011. She even borrowed the ALS acronym to come up with the name “A Long Swim.”
Deena has dedicated her summer of athletic events to A Long Swim, a nonprofit that is dedicated to raising funding for collaborative ALS research by creatively using open water and marathon-distance swimming in unique venues. “ When my grandmother passed away from ALS when I was a senior in high school and it was the first time I was exposed to such a devastating medical tragedy.
We all know about cancer and heart disease but ALS? It was foreign and just so unexpected. Watching her suffer and seeing my family around her go through the million emotions we went through still remains one of the hardest and most impactful learning experiences of my life. My grandma, was my first best friend and her death created such a void in my life that I don’t try and pretend isn’t there, instead I add new memories and experiences that I know she would find joy and happiness in. I have always lived wanting to keep her memory and legacy strong so I often reflect and find myself doing things I know she would love or things she showed me that I can pass on to my family. She was a significant part of my personal development and the first 17 years of my life was molded with her influence. I am choosing to honor her and the many who have been diagnosed with ALS by racing triathlon.
"God has given me the gift of endurance and I want to use these qualities to help raise support and awareness for ALS. I am hoping my races can be the catalyst of more important things such helping with research for new found cures and discoveries of where and how we can stop and prevent ALS for others”.
There is no cure for ALS, a neurodegenerative disease in which patients gradually lose their ability to use their muscles. As a sharp contrast to the loss of someone’s ability to use their muscles, swimming requires the use of all of an athlete’s muscles, all of the time. Since 2011, A Long Swim has hosted swims of the English Channel, Tampa Bay, Manhattan Island and the Molokai Channel, and now hosts open water swimming events in the Chicago area. Through the unique use of open water and marathon swimming, A Long Swim has raised $500,000 for collaborative ALS research, and has no plans to stop until there is a cure for this horrific disease.
