JACKSONVILLE, Fla. – Hundreds of people raised money Saturday to find a cure for ALS, a deadly disorder that affects the nerves and muscles, eventually taking away someone’s ability to walk, talk and even breathe.
Two years ago Saturday, the disease, also known as Lou Gehrig’s Disease, claimed the life of longtime News4JAX executive producer Sharon Siegel-Cohen. She was diagnosed in 2018.
She was beloved at the station and was always optimistic as she valiantly fought the disease for two years. Shortly after she was diagnosed, she had this message for those who were rallying behind her.
“Given what I’ve been given, every day it has been very special, and I am not going to give up. I feel very lucky. They say Lou Gehrig said that he is the luckiest man alive and I really feel that. Despite everything, I feel like the luckiest person alive, and that’s because of all of you,” Siegel-Cohen said in 2018.
She became an advocate for those with ALS and participated in The Walk to Defeat ALS herself.
This year marked the 18th Walk to Defeat ALS -- and it was the first time supporters were actually walking since 2019 because of the pandemic. Last year, the event was a car parade in an effort to social distance.
This year’s goal is to raise $275,000 to go toward research to find a cure.
More than 500 people were part of Saturday’s walk, including a team in Sharon’s honor, called Sharon’s Songbirds.
Sharon’s parents were at Saturday’s walk to honor their daughter’s life and stand with others still in the fight.
“She was always personable, loved people, loved to tell stories with people -- about people,” Edward Siegel said.
“She fought a brave fight and she worked until the point that she could not. If you went to see her, you would never know if anything was wrong except the fact that she was in a chair and could not walk,” Helen Siegel said.
According to the ALS Association Florida Chapter, 1,600 people in Florida are living with the disease. One of them is David Boucher, an Army veteran who was diagnosed four years ago while serving. Now, he’s forced to mostly use technology to communicate.
“People should try to support what this disease is,” he said at Saturday’s walk.
His wife, Melissa, said seeing the support Saturday was encouraging.
“(Knowing) there is that support out there that we can reach out and there are so many people that understand what I am going through because they have been through it and they have had family members (go through it),” she said.
There’s no cure, no sufficient treatment and it’s terminal. That’s why those who put this event together say it is important.
“People living with ALS and their families -- it is a disease that you really don’t understand how terrible it is until it impacts your life,” said Michelle Decker, Senior Development Manager for the ALS Association Florida Chapter. “At the event, people are able to talk with other families who are going through exactly what they are going through and I feel like that is really powerful because you really don’t understand until it explodes into your life. It is devastating, it is a financial hardship, it’s emotional.”
Those walking in the event wore one of four lanyards. Red represented someone supporting the cause and wanting to defeat ALS, blue meant someone was walking in honor of someone who has ALS, yellow was for someone who is battling ALS right now, and white represented someone who died from ALS.
The Cannon family knows the pain of wearing a white lanyard.
Lindsey Cannon walked for her dad, John, who passed away in 2020 from ALS.
“He was a hero to our family. He was a good guy,” Cannon said. “Me and my mom were his caregivers, so seeing the strongest man in your family turn into the weakest in a matter of months was definitely tough for me and my family.”
Before the walk began, News4JAX anchor Melanie Lawson emceed a ceremony to hear from some who are currently battling the disease and to honor those who have died from ALS as supporters made it their mission to join the fight.