ALS walk enters fifth year in Woodbridge BY KATHY CHANG Staff Writer PHOTO COURTESY OF ABBY ANDERSON Ira Anderson battled with amyotrophic lateral sclerosis (ALS) for 38 months before he passed away in 2004. The town will hold its fifth annual Walk to Defeat ALS on May 4. WOODBRIDGE- As the fifth annualWalk to Defeat ALS (amyotrophic lateral sclerosis) approaches in the township, Abby Anderson reminisces about her father, Ira, who battled ALS for 38 months, and the accomplishments that she and other ALS advocates achieved on Capitol Hill. "My father's last e-mail to his family and friends was 'my incredible daughter is fighting for all of us right now on Capitol Hill'…it was May 18, 2004," she said. "It was hard for him to communicate because of the disease. He was using a high-tech computer, blinking letter by letter. He was well aware of what was going on; it was like his mind was trapped inside his body." Anderson said her father would e-mail everyone with his progress, pictures of his granddaughter and his poetry. The fifth annual Walk to Defeat ALS will be held 11 a.m. May 4, rain or shine, at the Alvin P. Williams Park in Sewaren. Registration starts at 10 a.m. According to the ALS Association, ALS is a fatal progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord, resulting in muscle weakness and atrophy. Lou Gehrig first brought national and international attention to the disease in 1939 when he abruptly retired from baseball after being diagnosed with ALS. A common first symptom is a painless weakness in a hand, foot, arm or leg. Other early symptoms include difficulty with speech, swallowing or walking. Familial (inherited)ALS represents between 5 and 10 percent of all cases. The rest arise spontaneously and mysteriously, making seemingly random attacks on previously healthy adults. ALS can strike anyone, anytime. Anderson's mother,Marcia, called her daughter to tell her that her father's breathing had changed. "I cried all the way home from Capitol Hill, knowing what was about to come, and he waited for all of us to be there," she said. Anderson's father, who was 57 years old when he passed away, was diagnosed with ALS when he was 53 years old, in 2001. "It started with his big toe in 2000," she said. "He complained of stiffness with his toe and thought it could be arthritis. He went to see a neurologist, and we found out that it was not arthritis. There is no test for ALS, all you could do was rule out other things." Anderson said most people with ALS are misdiagnosed. "We were pushing for a diagnosis because we pretty quickly suspected ALS, because it's devastating to just know that you might have a fatal disease," she said. "It started with his toe, then he could no longer lift his foot and had to drag it. Limb by limb, he was becoming paralyzed. Soon he was walking with a cane, then a walker … he had a lot of falls. When he fell and broke his ankle, he had to be in a wheelchair, where he remained." Anderson said her father, who owned his own financial planning business on Main Street, took every loss with such dignity. "He purchased a van where he could plug his wheelchair into and drive," she said. "When his right arm became paralyzed, he would use his left arm … he took everything in stride." Anderson said her father became a big advocate for the disabled. "He was always compassionate, and reached out to the late Mayor Frank Pelzman. He advocated for the senior citizens, transportation for the disabled, and pushed to get computers at the libraries for the blind," said Anderson. "He just talked to everyone and loved to help." Anderson and her family and friends attended the annual Walk to Defeat ALS for three years in Jersey City. "A friend of my father's asked, 'Why go up to Jersey City? Why not just start one in the township?' " she said. After talks with the Greater New York Chapter of the ALS Association, a sister walk was held in 2004 at the Alvin P. Williams Park in Sewaren. "It was 250 people of my family and friends of my father," saidAnderson. "The walk was held onMay 4, 2004, and my father was able to see and participate in the first walk. I didn't want to advertise too much because I didn't want it to take away from the Jersey City walk. We raised $25,000 that year." After theALSAssociation saw photos and the video of the event, the walk in Sewaren was put in place as well as two other walks. "A walk was started in Saddle Brook and Long Branch," said Anderson. "The walk in Jersey City is no longer held. We are all raising over $100,000." Anderson said last year's walk raised approximately $300,000 because of talks with the company she works for, Duane Reade, a chain of drug and convenient stores primarily in New York City. "They have been so supportive," she said. "My company sponsors the New York Yankees and we were able to sell paper baseballs for $1 as part of the "Strike Out ALS" campaign. Anderson was able to stand on home plate at Yankee Stadium on April 18, 2007, representing Duane Reade with Yankee first baseman Jason Giambi. "It was exciting," she said. Anderson said progress on Capitol Hill has been tremendous since 2003. "Pretty much everything we have asked for has been given to us," she said. "We have had the 12-month Social Security disability waived to five months for ALS patients. It was a huge win. Congressman Michael Ferguson [R-7th District] has been a driving force in our efforts." Anderson said that through studies there is a big connection with ALS to the military, and the U.S. Department of Defense has been a big part of raising money for ALS research. "The Department of Defense has started a database of all military personnel who have been diagnosed with ALS, and we are pushing to expand that database nationwide," she said. "Last year it passed in the House [of Representatives], and we are waiting for the Senate." Anderson said she misses her father. "It's really hard letting him go, he always is going to shine on us. … We couldn't save him, but we can fight and save others, and this is what it is all about," she said. For more information about the walk, call Courtney Bollman and Kristine Wertheimer at (800) 672-8857, email walk@als-ny.org, or visit www.alswalks.org. For more information about ALS, visit www.alsa.org.