LUTZ - It all started when a recent transplant from Massachusetts met up with a new friend on the golf course at Cheval.
Gary Dassatti, recently retired and new at Cheval, met a new friend, Doug McGuiness. Dassatti learned quickly that his new friend had the most horrible of diseases. He suffered from amyotrophic lateral sclerosis, a fatal, progressive, neurodegenerative disease for which there is no cure.
Most people know it as Lou Gehrig's Disease, after the former New York Yankee baseball star who died of the same disease just two years after the end of his playing career.
There are no tests for ALS, no treatment and no cure. It's a torturous way to die as the brain loses all contact with the muscle system.
Dassatti decided he was going to bat for his friend.
"I wanted to do some volunteer work after I retired and after I met Doug and knew his condition, I knew I what I wanted to do. There's no cure for ALS yet, but I wanted to raise money for ALS awareness. I really wanted to get involved."
Dassatti had worked in the food business and started making connections. He started holding fundraising events, including the Ride to Defeat ALS, a cycling event in Largo, and last year, he raised almost $4,000 for ALS awareness. This year he is trying to raise the bar. He has neighborhood groups that attend Tampa Bay Lightning and Tampa Bay Rays games. He also hosts a Walk to Defeat ALS every spring at the University of South Florida.
Dassatti isn't looking for praise, just the help of the Tampa Bay community.
"No one knows why people get ALS,'' Dassatti said. "One of the things we do know is that people who serve in the military are twice as likely to get ALS. Every 90 minutes, someone is diagnosed with ALS and every 90 minutes someone dies of ALS.''
ALS is a death sentence. Doctors inform their patients to get their affairs in order, Dassatti said. With no cure in sight, there are no other options.
Dassatti travels to Washington, D.C., every year for the National ALS Advocacy Conference. He meets with lawmakers to try to gain their support for more funding for research. Availability of drugs to ALS patients is of vital importance since most ALS patients rarely make it past five years after their death sentence.
Dassatti is concerned that ALS isn't being taken as seriously as other potentially fatal diseases.
"If you get cancer, for instance, it can be treated,'' Dassatti said. "People hear about cancer, but they don't hear about ALS and that's not right. This is a terrible disease which leads to a terrible death. I am passionate about this. We have to do something.''
For more information on helping the fight against ALS, check www.alsafl.org.