Tom Cioffi’s ALS story started with a walk and continues with a different kind of walk. Throughout it all, among the lows and highs, Tom has remained grateful for having people by his side.
In the summer of 2015, Tom was taking another of his many evening walks with his wife Debbie. Together, they have been married for over 37 years. After all that time, they still appreciate the quiet moments together. This particular walk stood out though, because he was feeling fatigue and cramping in his upper legs. The symptoms got worse over the next few months and Tom visited with many specialists.
After seven months of testing, starting in January of 2016, Tom was diagnosed with ALS. It was devastating news, but Tom had reasons to reflect and be grateful. Even as the disease has progressed to take his ability to walk and made it difficult to speak, Tom looks back on a successful career in insurance sales and an even more successful job as a father of two sons, Joe who is 35 and Luke who is 32. Both of Tom’s sons are engineers and married with two children each with a fifth due in March 2019 to Joe and is wife Kelli. Life feels even better for Tom knowing that his children live nearby in Chester and Lehigh Counties, so he can always be near family.
In addition to being grateful for his life, family, and career, Tom quickly found reason to be grateful for the successes of ALS advocacy. In August of 2016, Tom began receiving Social Security and workplace disability benefits. He greatly appreciates not having to wait long for Medicare coverage to begin because he knows very well the challenges of Medicare and the healthcare system.
These are reasons why Tom continues to be positive, especially as he looks forward to the holiday season. His large family in Pennsylvania, New York, New Jersey, and Florida, plus friends near and far, keep his spirits high. Working in the healthcare field and spending so many nights with his wife on walks and dinners makes Tom even more grateful for her new role as primary care taker.
This October, these different forces all came together as part of Team Tom for the Lehigh Valley Walk to Defeat ALS. Together, they raised $12,235 in honor of a man who continues to exude such brightness into the universe. Tom’s smile brings joy to all who walk beside him, and he recognizes both how fortunate he is as he faces ALS and also how much more challenging the disease can be for others.
“I encourage any of my fellow persons with ALS to participate in a local Walk to Defeat ALS, whether they have a team of 80 or a team of 2,” Tom said. “It is such an inspiration to see the love and support that is on display every year that we walk and it is amazing to see how many of my friends and relatives come out to support me and the ALS cause, some of whom I haven’t seen in decades. It energizes me beyond words.”
While ALS has compromised Tom’s ability to speak, he continues to use his own Assistive Technology device to use all of the words he can to organize, inspire, and make life happier for everyone around him. He thinks of Lou Gehrig often, not just because they share a disease, but because he considered himself “the luckiest man on the face of the Earth.”
“I can honestly say, without exaggeration, that is exactly how I feel after every Walk to Defeat ALS,” said Tom.
It should come as no surprise that many others feel the same way towards Tom after any ALS event. The staff at the Chapter, his clinic team, and other walk leaders all feel the positive energy that Tom brings to every occasion.
This December, Tom continued to bring his positivity when he brought his family, including his grandchildren, to the Chapter’s ALS Patient and Family Holiday Party. His grandchildren danced with the Phanatic, got their faces painted, and opened presents on a day when ALS may have been visible all around them, but it was also the furthest things in their mind.
Events like the Holiday Party and the Walk to Defeat ALS may make ALS the priority, but they let Tom focus on the things he loves being the most. Not a person with a disease, but a loving husband of nearly 40 years, a proud father, and an incredibly happy grandfather.
“The staff at The ALS Association does such a phenomenal job hosting these events,” Tom said. “Each one of them offers tremendous caring, and, even though I do not know any of them all that well, I love them dearly for what they do for me and my family.”
In return, Tom is doing a lot for everyone at the Chapter and for everyone who gets time to be close to him and his family. ALS is unquestionably difficult for every person facing it, but Tom’s positivity breaks the ice and makes all feel welcome and at ease. Tom has built his own team, but he has also shown that teams of all sizes can make life easier when dealing with a challenge like ALS. Whether it’s 100 people or one person, every single person that helps and adds to a team makes life better.
From Tom’s team to all teams big and small, we hope you have a wonderful holiday filled with positivity and joy.