JACKSONVILLE, Fla. – Hundreds of people took part in the annual “Walk to Defeat ALS” on the campus of the University of North Florida.
It was an effort to raise money for research and to help find a cure for the disorder that affects how the nerves and muscles work.
“This disease is an ugly disease. But I am not going to let it define me,” said Max Snyder, who was diagnosed with ALS in 2022.
One of our colleagues had that disease. Beloved executive producer, Sharon Sigel-Cohen, battled it and died in 2020. Several of our News4JAX co-workers walk in this event in Sharon’s honor.
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Snyder and Bob Cooney said they are brothers for life, even though they just met Saturday morning. Both men battle ALS.
“I lost feeling in my mouth, tongue, and lips. It started migrating down to my upper body. Now it is progressing to my legs,” Snyder said.
Cooney was diagnosed with ALS in March 2023.
“It started in my diaphragm. I can’t breathe. I still walk around pretty good. I am starting to get a little bit of weakness in my muscles,” Cooney said.
But both of these men said this disease will not define them.
“I am defined as a child of God. I love my Lord and savior, and each morning, I say, ‘Thank you for letting me wake up one more day. Hopefully I can bring a smile to someone’s face,’” Snyder said.
Cooney said he just makes the best out of life.
“It is a journey. We are going to continue to try to find joy,” Cooney said.
Kristi Hudgens is walking to support her father who was diagnosed with ALS in 2021. She also walked to honor a co-worker who is also battling the disorder, and for a few who unfortunately have died.
“He is my hero. He is my hero,” Hudgens said of her father. “Through ALS, he has always been laughing and smiling.”
Hudgens said it is hard to watch a loved one being diagnosed with ALS and living through that.
“As a daughter of someone who has ALS, you just watch your loved one go from up here to down here,” she said. “You watch their body. It cripples them. It literally cripples them.”
According to the ALS Association, within the last year, the state of Florida has committed $2.5 million to support ALS clinics. Two of them are in Jacksonville at Mayo Clinic and UF Health.
Patients are now able to get multidisciplinary care, which is meeting with eight different doctors during a single appointment at a clinic.
Cooney and Snyder said in their daily battles, they hope to motivate others.
“I always like to say that we are not here for a long time. We are here for a good time,” Cooney said.
Snyder said a positive attitude is key.
“Don’t go down those dark rabbit holes. They lead nowhere. Look up, try to choose to be happy,” Snyder said.