Hundreds walk to defeat ALS in Ancient City – St. Augustine Record

Since losing her husband to ALS in 2009, Alecia Jones Bailey has made it her mission to fund a cure.

Since losing her husband to ALS in 2009, Alecia Jones Bailey has made it her mission to fund a cure.

Her husband Keith Jones, a former football player at Florida State University and father of two, lost his battle with ALS at age 38.

But before he died, Jones passed on one small task to his wife raise more than $2 million for ALS research by February 4, 2020.

He developed Project 2-4-20 because he wanted to live one year past his 50th birthday, Bailey said. Of course he passed away from ALS, which I don't know how much people know about ALS but honestly it's the last one I would pick. It's just a really, really tough disease.

Bailey said the goal her husband set was an example of his ambitious, go-getter personality.

Now 10 years into her mission, Bailey has raised around $950,000 for ALS, and Project 2-4-20 continues to fight for a cure with her second husband, Mark Bailey of the Bailey Group.

The Baileys now work with the ALS Association to organize the annual Ancient City ALS Walk in St. Augustine. The event celebrated its fourth year on Saturday.

Tom Lent, a St. Augustine man living with ALS, cut the ribbon before the walk last year and this year. His team Kiss My ALS is a huge participant in the walk every year.

Hundreds then marched from Ripley's through downtown St. Augustine, winding from the fort to the Plaza and down St. George Street. They were cheered on by the St. Augustine High School band, the Flagler College choir and Jacksonville Jaguars cheerleaders.

ALS, also known as Lou Gehrig's, is a disease that causes the muscles to atrophy and eventually leads to paralysis. There are some treatments that can slow the degeneration, but those with ALS usually only live three to five years after diagnosis.

This year, the walk was able to raise more than $150,000, which was presented to the Mayo Clinic in Jacksonville to fund research and care for ALS patients. Bailey said using the money they raised in St. Augustine, Mayo has made strides in learning more about how ALS develops in Chromosome 9.

If they can make that kind of progress at Mayo, that is why we are so dedicated and hopeful that they will eventually crack the code and find the cure, Bailey said. That's why we send [the money] right to our backyard.

Leslie Spitzer and her family travel around the country to participate in different ALS walks every year. Spitzer lost her mother-in-law Susan Baker to ALS in 2013, and they've been participating in walks ever since as Susan's Soldiers.

This is our first time in St. Augustine and we came just for this because we like to do a walk every year and raise money, Spitzer said. We love to hear the stories and see the same people coming back, especially the patients that are affected.

Kerry Wager has lost three family members to ALS, including her mother. On Saturday she wore a T-shirt with their names on it and walked to show her support.

When somebody gets ALS, it's a little bit devastating, Wager said. The walk is a nice reminder that hopefully something good can happen.

Bailey said she has met so many families through the walk that often turn to her for support as they go through what she experienced with her husband. But the walk is a chance for them to rally behind a cure.

I think it's hard for families to even walk for their loved ones because they're exhausted, they're depressed. It's such a debilitating disease that a lot of times you just want to suppress it and go on with your life, Bailey said. It's been nice and very cathartic to be able to help the families as much as we can and I think it gives them hope that we will solve the puzzle that one day we'll have a world without ALS and that will be a great day.

Read the original:
Hundreds walk to defeat ALS in Ancient City - St. Augustine Record