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How De-Feet ALS started
My father Raymond Luther was diagnosed with ALS in September 2011 at the age of 83. He succumbed to the disease on Friday January the 13th of 2012.
My father started to run around the late 70’s to lose weight. He started by running from telephone pole to telephone pole then walk to the next one then run again. Eventually he stopped the walking part and was able to run the entire time. That turned into him started to run races around Rochester. He eventually became so good that he started winning his age group in the local races. Which by that time was the over 50 age group. It was funny when my parents and I would vacation up through New England and my dad would find a race to run in. He would end up winning his age group and the locals were wondering who this guy that showed up and kills the over 50 age group. He moved up to doing Marathons and as he did in the shorter races, would win or be in the top 3 of his age group. I remember all the trophies and medals my dad had, but he kept them in boxes and never displayed them for anyone else to see.
In 1982, he and 15 other marathon runners over the age of 50 decided to raise money for a local children’s hospital fund by running across the county. They ran from the Golden Gate Bridge to Coney Island. They were supposed to then run from Coney Island back to Rochester, but they changed their minds and I think they were just tired of the run and wanted to get home. They ran approximately 3,000 miles and did it in 17 days. At that time, they had set the record for men their age running across the country. That wasn’t the end for this group either. The very next year they ran the circumference of NY State, carrying the torch for the Empire State Games. That was a shorter run and they all ended up lighting the flame that started the Empire State Games in Syracuse. For those who don’t know, the Empire State Games are similar to the Olympics for NY State residences.
Dad continued to run and compete for several years and then just decided he didn’t feel like running. His golf game was getting better and I think he wanted to play more golf and the running was getting in the way.
Dad was fortunate and he was playing golf up until March 2011, when he had fallen a couple time on the golf course where my parents spent the winter in North Carolina. He figured he would wait until they came home in May to go see a doctor about his fall and other issues he was having. As in a lot of cases, I’m pretty sure the doctors knew early on what was happening, but they passed him along to the specialist to make the final diagnoses. As I said, that was September 2011.
After my father's passing and I found a local race in Rochester that supported ALS research, I decided I wanted to help raise money for ALS research. I spoke to the Race Director Mort Nace who puts on the Medved Father's Day 5K that raises money for ALS TDI. He provided me with his contact at ALS TDI and I went from there. I traveled to Boston for their annual White Coat Affair and got to really see what ALS was about. The only person I knew who had ALS at that time was my dad and I knew the struggles we faced taking care of him. I then saw all the other people with ALS and their families. They were all there, trying to raise money for a cure. That motivated me to start raising money for ALS TDI and start my nonprofit, De-Feet ALS.
De-Feet ALS puts on events around the Rochester, NY area to raise money. Some of the events are running races. Some are beer and wine tastings. One was a group of runners, including myself, that ran from Rochester, NY to Cambridge, MA to the front doors of ALS TDI. This run was to mimic my father's run across the country in 1982. We ran 400 miles in two and a half days, running 24 hours a day. Each runner ran four miles and would hand off to the next. Even though this was not the 17 days of running my father endured, it gave me an insight to what he had done.
If you want to learn more about ALS, ALS TDI or want to contribute to helping cure this terrible disease, please contact me.