Steve Franks was stunned when the doctor told him he had ALS. "I'd heard of it, but I didn't know what it was," Franks said. "The diagnosis changes your life significantly, at least mentally, trying to get your head wrapped around it."
ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, attacks nerves and causes degeneration of the brain and spinal cord. Victims lose the ability to control their muscles and eventually end up paralyzed and unable to breathe on their own. They never lose their ability to think or feel, however. Most victims die within two to five years after being diagnosed.
There is no cure.
Franks, 51, has beaten the odds so far. He was diagnosed with ALS seven years ago and, although he had to quit his job as a golf course supervisor, is living a full life.
He has also become a somewhat reluctant spokesman for ALS awareness. Reluctant because he is not typical of most victims, and he fears that people unfamiliar with the ravages of the disease will look at him and think ALS isn't so bad.
"That's one of the frustrations I have," Franks said. "The general public doesn't realize what a cruel and horrible disease it is."
On the other hand, Franks sees himself as lucky because the slow progression of the disease enables him to help raise peoples' awareness about ALS. If more money were funneled into research, Franks said he believes discoveries could be made that would slow the progression of the disease for all sufferers and allow them to live normal lives.
"There's not enough of us to make the government and the pharmaceutical companies spend money on research," he said. "We're just not a good return on investment. That sounds horrible, but it's the truth."
So when the ALS Association Florida Chapter created its "Piece by Piece" campaign, Franks jumped at the chance to be in charge of it. The campaign is composed of 150 legless, armless mannequins. Each wears a T-shirt with the name, birth year and year of death of an ALS sufferer.
"It's a metaphor for how Lou Gehrig's disease steals your body piece by piece," Franks said.
Since the campaign began in January 2009, Franks has hauled the mannequins about 10,000 miles — all over Florida and, most recently, to Washington, D.C., for National ALS Awareness Days.
Franks and other ALS advocates from Florida wanted to meet with U.S. Rep. C.W. Bill Young, R-Indian Shores, to ask for his help in securing funding for research. They were unable to meet with him in Washington but hope to do so locally.
When he meets Young, one of the things Franks wants to tell him is the toll ALS takes on the friends and family of the victim.
"That's hard, telling your kids," Franks said, tearing up at the memory. "It was hard on them. Hard on my wife. Hard on my mom."
He added, "It's important for people to know how devastating this disease is. Not because I want sympathy. But until there's an uprising or a big push with awareness, there won't be funding that leads to research."
Reach Anne Lindberg at firstname.lastname@example.org or (727) 893-8450 or twitter.com/alindbergtimes.