Imagine being 58 years old with so much life left to live and out of the blue you have an issue with your finger, then your foot. A few months later you are told you have a terminal neuromuscular disease called ALS. Your doctor’s say, “I’m sorry, but you need to get your affairs in order because the survival rate with ALS is only 2-5 years.”
“This was my mother-in-law’s story”, Sherry DePerno explains. Sherry is the Founder and Executive Director of ALS of Utica, founded in March 2003. This month marks the 20th anniversary.
In 1999, at age 58, Carolyn DePerno was diagnosed with ALS, four months later she succumbed to her illness. Sherry describes her as “beautiful, vibrant, and full of life.” ALS is debilitating and a devastating diagnosis to receive. Sherry explains, “I was only the daughter-in-law, yet it ripped my world apart.” At the time, Sherry was a first-time mom with a new baby. She and her husband Rob DePerno helped run their family manufacturing business. Rob was Advanced Tool’s lead engineer and tool designer. When his mom got diagnosed, Sherry said, “he had no choice but to temporarily check out of our marriage and business to become a full-time caregiver.”
Years after Carolyn’s passing, Sherry says the effects were so deep she felt compelled to help others who were facing the same fate. ALS of Utica was born. She says, “I never had huge goals. I just hoped to make a small difference, but God had way bigger plans for ALS of Utica. The organization took on a life of its own”.
For years, ALS of Utica ran the wildly popular, and always sold out Yankee Raffle. They held the ALS Walk & Run with event attendance topping 1,200 people. They held Masquerade Balls and the CakeEater Classic Golf Tournaments. In the first 10 years, they raised over $1 MILLION dollars in Oneida and Herkimer counties.
The money raised goes back to local ALS families. On day one, an ALS family has access to $10,000; $5000 in estate planning for home care services and a $5000 wish grant. The $5,000 wish grants are renewable and available to each family every year. Sherry is proud of the financial support they give and says, “it’s a drop in the bucket compared to what it costs to live with ALS. They need these funds”.
Besides financial support, one of the things Sherry feels they do best, is give emotional support. “We hold the family’s hand and walk them through step-by-step what they are about to face. We teach them their journey is not over, just different than originally planned. We strive to be a bright light in a dark situation”.
Surprisingly, ALS of Utica is an all-volunteer organization. They have operated that way for two decades. Sherry explains that there has been an entire team of people that have made ALS of Utica what it is today. There has been numerous supporters, volunteers, founding members, event committee members, and board members. Sherry says, “I get to do this work because of all the people who’ve helped me over all these years.”
Sherry especially wanted to recognize the current Board of Directors, she says, “their dedication to this cause and our ALS families is unmatched”.
ALS of Utica’s Board of Directors includes Sherry DePerno; Board President, Yvonne Buehler; Secretary/Treasurer, Sue Giglio; Patient Advocate, David Abdoo, Judy Galimo, Julie McCarthy, Danielle Padula and Advisory board member Dr. Joanne Joseph.
ALS of Utica depends on fundraising, dedicated donors, and ALS families that hold events on their behalf. If you would like to learn more or show your support, please visit ALSutica.org.