Leigh with her father spending time together after a Walk to Defeat ALS
Team sports require everyone to work together to succeed. That is what every athlete learns from their first day on a team and it is what our May 2022 Volunteer of the Month Leigh Kaczmarczyk learned from her father Curtis Johnson. Before Curtis “CuJo” Johnson was diagnosed with ALS in 2015, he was beloved for his work in the community and his work coaching softball for over 30 years. He had learned his own lessons about sportsmanship from playing football and baseball at East Tennessee State University, where he met Barb, the woman who would be his wife for more than four decades.
As a coach, Curtis knew how to deliver a pep talk and how to deliver bad news to athletes and parents. Nothing could adequately prepare Curtis, Barb, and their two children for when Dr. Simmons said the words “I’m sorry, Mr. Johnson. You have ALS,” during a visit to The ALS Association Certified Treatment Center of Excellence Penn State Hershey Medical Center in August 2015.
When people get an ALS diagnosis, they have many questions. Curtis had one. “Just tell me, Dr. Simmons, will I be able to dance with my daughter at her wedding?” Leigh was not yet engaged to her now husband, but Curtis, ever the athlete and father, had his most valuable teammates on his mind.
Dr. Simmons could make no guarantees about the wedding, but he did promise, “We are going to do everything we can for you, Mr. Johnson.” That “we” showed that Curtis was now going to meet another group that valued teamwork, the clinic team at Hershey Medical Center.
Every time that Curtis would go to The ALS Association Treatment Center, he would see a team of up to 12 professionals, including a neurologist, nurse, and other trained therapists and specialists who could assess the progression of his ALS symptoms and connect his family to the best resources.
“The Chapter wrapped their arms around my family immediately,” said Leigh. “We were given the diagnosis, and Sue Walsh and Maureen Reid swooped in and were there for us through every phase of the disease offering both emotional support and logistical advice throughout. They helped us anticipate the changes on the horizon and grieve the physical abilities that were escaping my father.”
Within hours of her dad’s diagnosis, Leigh says she went into “fight mode,” looking for a way to fight on her father’s behalf. She remembered the famous Ice Bucket Challenge from the year before and searched to see what was happening locally through Instagram. That is where she saw the work of the Philadelphia Phillies to Strike Out ALS and how one of their current stars, Cody Asche, had been very public in his support online.
Leigh quickly started another team, this time for the Philadelphia Walk to Defeat ALS. True to her dad’s history in sports, they called their team “CuJo’s Defensive Line” and brought together family members and friends. Their fundraising caught the attention of the Chapter and Leigh and her dad cut the ribbon at that year’s Walk. They even got to thank Cody in person for inspiring them to get involved.
Leigh and her dad were able to thank the Phillies in person at the Phillies Phestival just months after that first event. Curtis talked sports with all of the players, and they made him feel like he was the most important person in the room. Because for the Phillies, and for Leigh, he most certainly was.
After that first Walk to Defeat ALS, Leigh made ALS her personal cause in every way she could. She volunteered at every Phillies Phestival, the Roger Kirk ALS Golf Outing, the Annual Celebration, and the Sips and Sweets events, including this year’s All in for ALS at The Fuge in Warminster, PA.
Curtis passed away from ALS in 2017. He was at Leigh’s wedding only in spirit, but he is still there in all of the work that she does and in the family she is raising today. When Leigh looks at her father’s life, it’s not the symptoms of ALS that come first, it is the love he gave to his teams, his family team first and foremost, but also his community, the schools, and the teams he coached. Now Leigh has found a home on the ALS team through The Greater Philadelphia Chapter and with the Philadelphia Phillies.
Leigh has become such an active presence at Chapter events that it was a surprise to people that she had not yet been Volunteer of the Month. But her efforts are never taken for granted. Everyone that sees her knows that her time volunteering is from the heart, just as her parents taught her.
Now Leigh and her husband Matthew are passing on those same lessons to their daughter, who is nearly two years old and has already been featured at the Walk to Defeat ALS. Matthew also supports the ALS cause at many events through the Chapter and in his community.
“My family and friends walk with us every year and say it’s their favorite day,” said Leigh. “To my friends at the Chapter and fellow volunteers we are bonded through ALS and I love our time together.”
Leigh, Matthew, and their whole family are bonded together, as one team, united by love for “CuJo” to end ALS. Thank you Leigh for all that you do.
Curtis's favorite team was always his family.
Leigh is continuing to honor her father by bringing her daughter to the Walk to Defeat ALS.