Be honest. Have you ever discussed with someone what the worst way would be to die? By fire? Drowning? Cancer? How about ALS?
ALS (Amyotrophic Lateral Sclerosis disease), often referred to as Lou Gehrig’s Disease, is a progressive, neurodegenerative disease that kills motor neurons, robbing a person of the ability to walk, talk, eat and eventually breathe. People with ALS become paralyzed when the motor neuron cells in their brain and spinal cord die. This results in the muscles wasting away while their brain, in most cases, is intact.
According to the ALS Association:
Currently there are approximately 300,000 worldwide living with ALS. In the U.S., there are more than 20,000 people living with the disease at any given time, with more than 1,600 in the state of Florida alone.
Every 90 minutes, someone is diagnosed with ALS, and every 90 minutes, someone dies from ALS. This is a fatal disease with no survivors; there is no known cause, viable treatment, or cure for ALS. It is always fatal, and life expectancy is only 2-5 years after diagnosis.
Military veterans, regardless of branch of service, in which they served, or peace or wartime service, are twice as likely to be diagnosed with ALS. Currently, the connection is unknown.
Most people are diagnosed with ALS between the ages of 40 and 70 with the average age being 55. This terrible disease knows no racial, ethnic, or socioeconomic boundaries. It can strike anyone at any time.
Dollars are needed to help fund research; to help with services for patients and caregivers, medical equipment, advocacy, assistance with home renovations, mobility vans and so much more.
It takes a village to fight this horrible disease. Special thanks to community minded LauderdALE Brewery who is working with the ALS Association Florida Chapter and hosting a Battle of the Bands competition along with other local businesses on Nov. 9 from 5-10 p.m.The FUNdraising event will be held at the Brewery, located at 3305 S.E. 14th Avenue in Fort Lauderdale. The public is invited to help judge the bands and any donations provided will benefit the ALS Association Florida Chapter which supports ALS patients and caregivers.
I’ll be there to help raise funds so that a cure can be found so that no one will ever have to be struck by this disease again.
I was caregiver to my soulmate — the love of my life, the parent of our two beautiful children — while he so bravely fought ALS. Not only was my husband tormented by the disease, but I, too, was tormented by watching him slowly die.
I will fight to help get funds to be used to find a cure for this dreadful disease until the day I die. Because I am telling you firsthand, ALS is the worst way to die.
Julie Spechler is a partner at Fort Lauderdale based S+O Communicators and a volunteer doing whatever she can to help raise awareness, raise funds, and assist patients and families fighting ALS. She lost the love of her life, George Fink at 64- years-old, last year to this unforgiving disease.