ST. AUGUSTINE, Fla. — The St. Augustine Walk To Defeat ALS raises funds and awareness to support research and care of this terminal illness.
Founded by Peter Ellis and Alicia Jones Bailey, both of whom lost their spouses to ALS, the annual event, has been rescheduled for next year.
Ellis, the former editor of the St. Augustine Record, describes the disease as hideous.
“You eventually become completely paralyzed but you don’t lose your cognitive skills, so you know exactly what’s happening to you,” he said. “My wife was paralyzed from the nose down. She could only communicate by blinking her eyes. But she knew exactly what was happening.”
The former school teacher succumbed to the disease two years after her official diagnosis. At the onset, Ellis researched the disease through the National Institute of Health where he was told that combating the disease was more challenging than rocket science.
“They told me that it was more complex,” he said. “And that struck me at how challenging and difficult it will be to find a cure for this terrible disease.”
According to the ALS Association, ALS, or amyotrophic lateral sclerosis is a progressive neuro-degenerative disease that affects nerve cells in the brain and spinal cord. ALS causes the progressive degeneration - and the eventual death - of the motor neurons (between the brain and spinal cord) responsible for voluntary movements and muscle control.
Simply stated, patients with ALS eventually lose the ability to speak, eat, move and breathe. Affecting those between the ages of 40 and 70, it’s demise is gradual and the initial symptoms vary. Disease progression and survival time also varies. However, muscle weakness and eventual paralysis is universally experienced.
The ALS Association says that ALS affects 205 more men than women. The levels become more equal for men and women diagnosed at a later age. Sporadic ALS occurs in approximately 90% of all cases while 10% of the ALS cases are inherited through a mutated gene.
Research shows - although for reasons unknown - that military veterans are more likely to be diagnosed with the disease than the general public. Research also shows that every 90 minutes, someone is diagnosed with ALS while someone passes away from this insidious disease.
ALS was identified in 1869 by the French neurologist, Jean-Martin Charcot. It became more widely recognized in 1939 as Lou Gehrig’s disease as it affected one of baseball’s most beloved players.
Other notables who succumbed to the disease include Stephen Hawking, theoretical physicist, cosmologist and author; Jim “Catfish” Hunter, Hall of Fame pitcher; Senator Jacob Javits; David Niven, actor; Stephen Hillenburg,”SpongeBob SquarePants” creator; Jon Stone, “Sesame Street” creator and Henry A. Wallace, former vice president of the United States.
For more information contact Michelle Decker at mdecker@alsafl.org or 888.257.1717 x130 or visit https://www.als.org/florida
Participation in the St. Augustine Walk to Defeat ALS® goes towards local care services, resources and more as The ALS Association Florida Chapter continually serves those living with ALS in Florida.