by Karen Brune Mathis
Managing Editor
More than 930 people among at least 80 teams pledged to walk 2 miles tomorrow to raise funds to help those who can’t, or eventually won’t be able to, because of ALS.
The Walk to Defeat ALS is scheduled at 10 a.m. at the Cinemark Theatres in Tinseltown. Check-in starts at 8:30 a.m.
One of the groups walking is Mueller’s Marchers in honor of Ernst Mueller, who has served as an assistant U.S. attorney and a lawyer with the City General Counsel’s Office.
Mueller was diagnosed with ALS – amyotrophic lateral sclerosis – in September 2008 at the age of 66.
The ALS Association said ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that slowly robs the body of its ability to walk, speak, swallow and breathe. ALS can strike at any time and there is no known cure.
Mueller will be at the walk, joined by a large group of relatives, co-workers, people from his church and other friends.
The former trial lawyer also will give a speech through a voice-generation machine. That will be at 9 a.m., said his wife, Nancy.
“The main thing for me is that the money will go toward research to end the disease or at least get treatment for people,” said Nancy Mueller.
“It is such a horrendous disease,” she said.
Mueller, who turns 69 at the end of May, will take the route in a six-seat golf cart along with Nancy’s 87-year-old mother and others who might want to ride.
His three sons, a daughter-in-law and 13-year-old granddaughter also are walking.
Here are some facts from the association:
• The life expectancy of an ALS patient averages two to five years from the time of diagnosis.
• 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.
• About 5,600 people in the U.S. are diagnosed with ALS each year and up to 30,000 Americans are estimated to have the disease at any given time.
• Most people who develop ALS are between 40 and 70 years old, with an average age of 55 at the time of diagnosis.
• However, cases occur in people in their 20s and 30s.
• According to an ALS database, 60 percent of those with ALS are men and 93 percent are white.
• ALS occurs in greater percentages as men and women grow older, and is 20 percent more common in men than women.
• However, with increasing age, the incidence of ALS is more equal between men and women.
• Symptoms can include muscle weakness in the hands, arms, legs or the muscles of speech, swallowing or breathing; muscle twitching and cramping, especially in the hands and feet; impairment of the use of the arms and legs; “thick speech” and difficulty in projecting the voice.
• The senses of sight, touch, hearing, taste and smell are not affected.
• It costs an average of $200,000 a year to provide the care needed by an ALS patient.
High-profile Jacksonville leaders who have died of ALS include Scott-McRae Group Co-Chair Henry “Tip” Graham and banker Tom Becker.
The association holds fundraising walks across the country to raise money for research and to assist with patient care.
The Jacksonville event drew 1,400 people last year and is expected to attract at least that many again this year, although not all are walkers, according to Katie Shank, the walk coordinator for Jacksonville and Orlando. She is with the association’s Florida chapter.
The Jacksonville fundraising goal is $195,000. It raised at least $144,000 as of Thursday afternoon and donations continue to come in, she said.
This will be the eighth annual walk in Jacksonville.
The 2-mile walk is open to those using wheelchairs. Strollers are welcome, as are dogs on a leash.
Mueller’s Marchers consisted of more than 90 team members as of Thursday afternoon. It is the second year the group has walked as a team and it has raised more than its $8,500 goal for 2011 so far.
The fundraising team list shows that members include U.S. Magistrate Joel Toomey, Circuit Judge Virginia Norton, City General Counsel Cindy Laquidara and Assistant General Counsels Mary Jarrett and Cherry Shaw, among dozens of others.
Mueller’s Walk to Defeat ALS webpage provides his story in his words.
“My name is Ernst Mueller,” he starts, continuing that he is married to Nancy and that they have three grown sons. The oldest is married and has a child and the younger two are single.
“We have lived in Jacksonville since 1972, leading a relatively stable and normal life until recently,” he said, explaining that his focus had been on his family, career, church and personal fitness.
“I was an Assistant U.S. Attorney for over 21 years, worked hard and had a grand time doing it,” he wrote. That was followed by 16 years as an attorney for the City of Jacksonville, where he recently retired.
“All my life, until recently, I’ve been fit, in shape, and physically active,” he wrote. He competed in triathlons for 10 years.
He was active at Lakewood Presbyterian Church, including serving as an elder and in the choir.
“And then, out of the blue, came ALS,” he wrote.
“It has caused me to lose my ability to speak effectively (it’s gradually getting worse), a bad thing for a trial lawyer, makes it very difficult to eat, and is gradually sapping muscle strength in other parts of my body,” he wrote.
“Worst of all, I had to leave the choir last April, for (the) simple inability to sing, the change in my life that has pained me most.”
Mueller wrote that the first overt symptoms of ALS were throat-related problems in February 2008. He ultimately worked through a series of doctors to reach the Mayo Clinic Neurology Department, which officially diagnosed ALS that September.
“Like others, I had heard of Lou Gehrig’s disease, but I previously had no idea what it really was or any idea that I could possibly get it. Now I have a specific idea how and when my life will probably end, but I don’t want to give in to it,” he wrote.
“I want to do everything I can to help fight the illness, both myself and for others.”
That’s where Mueller asks for support for the walk and research for ALS.
“We all know it will be a long and tough battle,” he wrote.
In June 2010, Mueller, senior deputy general counsel for the City, was honored with the Justice Raymond Ehrlich Trial Advocacy Award.
His law career spanned nearly 40 years and included the prosecutions of former baseball star Denny McLain on racketeering charges and Carlos Lehder, founder of the Colombian Medellin drug cartel.
The award committee evaluates applicants based on the qualities that made Ehrlich a role model, including a steadfast obedience to ethics; thorough preparation; respect for all participants in the legal system; always even-tempered; aggressive advocacy; professionalism; driven by what is right, not by fees or billable hours; discerning; scholarship; and mentorship.
It also was based on giving a “willing assistance to those in need.”
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