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Harpoon has always held a special place in my heart. Not only did I meet my husband, Zack, at Harpoon’s 2011 Octoberfest, but the 5-Miler and the Angel Fund for ALS research are particularly meaningful as my family has lost not 1 or 2 or 3, but 4 (possibly even 5) family members to ALS.
My Poppop, George Manduke, was the first documented family member to succumb to ALS. However, we strongly suspect from hearing descriptions from the “old folks” in the community that my Great Grandfather Michael Manduke also had ALS. According to my mother, the first sign of trouble became apparent in the summer of 1983 when her father began to trip while walking, for no apparent reason. No one had even the slightest inkling that it was the first stages of ALS. Many months of tests and assorted therapies followed, and the family held on to the hope that it was something treatable. My parents were married in March 1984, and the diagnosis came in September of 1984. While some people had heard of Lou Gehrig's disease, most people had no idea what ALS did to the patient and their families. With a Monday Night Football game on the TV, Poppop passed at home on October 7, 1985, one year before I was born. He was 62 years old.
Nine years would pass before the unthinkable happened again, and my family found out that Poppop's brother, my Great Uncle Nick Manduke, also had ALS. This discovery shook the entire family, as no one had even considered the possibility that ALS could be familial. My mother recounts a phone conversation between her mother and my Great Aunt Marie that took place before anyone even considered the idea of another family member developing ALS. In this conversation, Aunt Marie relayed how her husband Nick one day complained about his steak being tough and hard to cut, when in fact, the steak was tender enough to cut with a butter knife. We now know he was losing strength in his right hand. Suspicions grew, and a diagnosis eventually followed. Suddenly, the scope of what “could be” changed completely. Now, the whole Manduke family realized that everyone potentially carried the ALS gene and with that, the knowledge that the gene had already been passed on to the next generation. My Great Uncle Nick passed on November 19, 1994 at the age of 69.
Five years after losing my Great Uncle Nick we lost another Manduke to ALS, my cousin Nick, Great Uncle Nick’s son. The diagnosis was devastating, since by that time we were well aware of what lay ahead for him and the family. Cousin Nick eventually disclosed to the family that he first knew that he had ALS while standing at his father's grave on the day Great Uncle Nick was buried because he had lost the ability to move one of his pinky fingers. Cousin Nick put up a herculean fight, holding onto his life for approximately 5 years. He passed on January 12, 2000 at the age of 47.
ALS became very real and very personal for me when my Uncle George Manduke, my mother's younger brother, was diagnosed in October 2007. Although we had already lost 3 other family members by then (and possibly 4, with my great grandfather), it was the first time I was old enough to comprehend the magnitude of this disease, especially for someone whom I had seen nearly every day of my life up until I left for college. Looking back, although we initially thought he had had a stroke, we realize he had actually been showing symptoms of ALS in the Spring. His speech, ability to eat, drink and swallow were the first to go, with limbs becoming affected as the disease progressed. The man who had taught me to ride a bike, gave me my first beer, and the man I (and my brother) called every time our car ended up stranded on the side of the road, was gone in just 6 months after being diagnosed, passing on April 7, 2008. Uncle George was 42 years old.
Much has changed in ALS research and support for the families dealing with this disease since my Poppop passed in 1985. Research efforts and fundraising have lead to the discovery of the specific genes involved in our inherited ALS. Although testing is available, my mother and her sisters have decided not to find out of they have the “ALS gene.” While my mother, her sisters, our cousins, my brother, and I know that there is a significant chance some or all of us have the genes for this disease, we hold onto the hope that fundraising and research will continue, with the wish that we won’t have to experience another loss in our family to ALS. This is especially true for me, as I now have a 5-month old son who I hope never has to experience the devastating effects of ALS.
While the fear from this knowledge can weigh heavy, our losses motivate us to enjoy each day and appreciate the times we have together. Through our shared experience, our big, caring, fun-loving family never misses a chance to get together and celebrate life over a pint (or two!). Because of this, I run the Harpoon 5- Miler every year in honor of George, George, Nick, and Nick, to raise awareness and funds to continue the research needed to end this disease. Hopefully in a few short years my son, Kevin George (named after his grandfathers, great grandfather, and great uncle) will be running it with me, and our efforts will contribute to a cure.
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