- FACTS ABOUT ALS
- ALS is not contagious.
- It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually. Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
- Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.
- About 20 percent of people with ALS live five years or more and up to 10 percent will survive more than 10 years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
- ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
- ALS can strike anyone.
- The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
- There can be significant costs for medical care, equipment and home health caregiving later in the disease.
- SOURCE: ALS Association
INSIDE: Read Rick McCrabb’s column on one Butler County family that lost a loved one to ALS.
Water — in its natural and frozen state — is paying deep dividends in the fight to find a cure and raise awareness for amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease.”
The ALS Association is getting flooded with money from drenched donors who accepted the “ice bucket challenge,” when, after being nominated, they either agreed within 24 hours to douse themselves with a bucket of ice-cold water or to make a donation, suggested at $100. Then, the person is allowed to challenge three friends to do the same.
As of late last week, the ALS Association had received $41.8 million in donations compared to $2.1 million during the same time period (July 29-Aug. 21) last year, it said. The money has come from existing donors and 739,275 new donors to the association. How significant is that? The total money raised by the national organization and its satellite charities last year was $64 million, according to revenue figures.
People are suggested to donate at www.alsa.com, the association said.
“This is something we could have never imagined,” Barbara Newhouse, CEO of the ALS Association, has said. “This has taken us to a whole new level.”
The popularity of the “ice bucket challenge” has gone viral on the Internet, thanks to the biggest names in politics, Hollywood and sports — and the guy down the street — shivering after being dumped over the head with water and ice.
According to Dr. Fernando Vieira, director of research operations at ALS Therapy Development Institute, all of the Internet attention has raised funds and peaked interest.
“It’s been almost surreal to see the world stop, look up and take notice of ALS,” he said. “It’s been a dream come true.”
Middletown Law Director Les Landen, who joined four co-workers Thursday in an “ice bucket challenge” outside the City Building, said some may consider the stunts “silly,” but because of the attention, they’re “critically important.”
Ben Trick, 32, who works in the Middletown water maintenance department, said before he was born his grandfather died of ALS. He said any awareness brought to ALS is much needed.
Minor league golfer Chris Kennedy is credited with steering the bucket challenge toward ALS, while former Boston College baseball captain Pete Frates and his friend Pat Quinn, who both have ALS, are credited with taking it to the next level. Frates was featured on ESPN, and the show chronicled his walk from standout college baseball player to his wedding day to when he needed assistance getting out of bed.
Several area people also have accepted the challenge.
On Thursday, Butler County Auditor Roger Reynolds and 19 members his staff stood in the pouring rain under the overhang of the Elder-Beerman building and in a continuous wave, dumped buckets of ice water over their heads. He has pledged $10 for each of his employees who participated.
In Middletown, City Manager Doug Adkins, Law Director Les Landen, Public Works and Utilities Director Scott Tadych, maintenance worker Jeff Phillabaum and Public Works Leader Charlie Anderson, who were challenged by water distribution employees, took the challenge on Donham Plaza. Adkins barely got wet, while the others were drenched.
Adkins said it was important for city employees to participate in the challenge as a way to show others “we’re all in this together.”
The fundraiser also has been controversial. Earlier in the week, the Archdiocese of Cincinnati told local Catholic schools not to participate in the “ice bucket challenge” if it benefited the ALS Association because the group includes embryonic stem cell research as part of its fight against the disease. Carrie Munk, a spokeswoman for the ALS Association, said stem cell research is one of six areas of focus for her group.
What is the disease that’s attracting all this attention?
ALS is a progressive neurodegenerative disease that affects the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
The drug Riluzole, which the Food and Drug Administration approved in 1995, slows the progression of ALS by regulating the levels of glutamate, an amino acid in the blood and spinal fluid that acts as a neurotransmitter. Abnormally high levels of glutamate are believed to contribute to damage to nerve cells.
Since ALS is not listed as a cause of death, exact numbers aren’t known.
The disease forever will be connected to New York Yankees slugger Lou Gehrig, who died from the disease in 1941. He was 37. Gehrig was diagnosed with the disease in the spring of 1939, and his farewell speech to the game, on July 2, 1939, ranks among the greatest moments in baseball history.
It also has claimed the lives of numerous people from the area, including Father Dan Schuh, 57, former pastor at St. Susanna who died in 2008, only six weeks after handing over most of his church administrative duties to an associate pastor; Lois “Tot” Schultz Ashworth, 61, a Middletown resident who taught in the Lakota Local School District for 30 years and died in 2007; and 1978 Badin High graduate Joseph Toerner, 50, who died in 2010.
Former Hamilton Councilwoman Katherine Rumph-Butler remembers the day in 1992 when her daughter, Christine Moore, 49, announced she had been diagnosed with ALS.
“That made me hurt,” she said. “I thought I was the one dying.”
Moore lived five years. An assistant dean at Miami University, Moore called her mother the afternoon when she fell while using a cane to walk from her office to her car. She told her mom: “I’m gonna clean my office because I won’t be back.”
Her mother added: “That was a hard five years.”
Toward the end of Moore’s life, she struggled to communicate with her mother and her husband, Alfonza Moore. Eventually, the family used index cards with words written on them, then she moved her eyebrows to form words on a computer.
“It was just a terrible disease,” Rumph-Butler said. “Her mind was great, but it was locked up in her body and she couldn’t get it out.”
Based on U.S. population studies, more than 5,600 people are diagnosed with ALS each year, or 15 new cases a day. It is estimated that as many as 30,000 Americans have the disease at any given time. According to the ALS CARE database, 60 percent of the people with ALS are men and 93 percent of patients are white.
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their 20s and 30s.
Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to 10 percent will live more than 10 years.
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