ALS Battle hasn't Dampened Spirits of ex-School Committee Member
By Jill Ricker, The Daily Item of Lynn, Tuesday, March 22, 2005

Former School Committee member George Mazareas, shown here with his wife Cynthia and 2-year-old daughter Eleni at their home Monday, has been trying to adapt to a life with ALS. (Photo: Reba M. Saldanha)

LYNN - George Mazareas is still the outgoing, personable sports enthusiast he was when he served out his final term on the School Committee in 2000, but the former Lynn basketball legend's life has drastically changed.
Two years ago, Mazareas was diagnosed with ALS, the crippling disease that causes brain and spinal cord degeneration and commonly referred to as Lou Gehrig's Disease.
 Since then, Mazareas' goals have switched from fighting for the rights of Lynn students to fighting his disease and for a cure.
Mazareas, who at age 45 has lost most of his motor skills to the disease, recalled when he first realized his health was in question.
"In the spring of 2003 I had a dislocated thumb that never healed and my body felt awkward well before that," he said. "For instance, I was playing a (basketball) game in October (2002) and I went to throw the ball down the court and I ended up being 10 feet off. In fact, I hit (City Councilor and good friend) Tim Phelan in the back of the head. He thought I did it on purpose."
Mazareas said he chalked his symptoms up to an operation he had had the year before.
"In June of 2002, I had an emergency eye operation and I was laid up for six weeks. I really thought that all the stuff I was feeling was a result of that operation and being laid up. Once you know you look back, and I realized I had symptoms way before that."
Mazareas was eventually referred to a neurologist, after doctors discovered he was missing muscle mass in both hands, but it was still months before doctors isolated his problem.
"One of the major hurdles that the scientific research community needs to overcome is there is no biomarker to effectively diagnose ALS," he said. "Right now, it's a process of elimination, so it was months before we knew what was going on."
Since his diagnosis, Mazareas has seen his health markedly decline.
I'm definitely not as active as I used to be," he said. "I'm spending a lot more time focused on trying to raise awareness and make myself more adaptive to my environment.
"I wanted to keep working, so I had to learn how to use voice-activated software and I try to stay a step ahead of the progressive disease it is," he continued. "I cannot feed myself, but I don't require around-the-clock attention. I can't open the door by myself, I can't dress myself, I've basically lost the ability to use my hands and arms and unfortunately, I am very off balance and unsteady on my feet so I primarily use a wheelchair. I acquired the wheelchair to maintain independence."
Still, Mazareas said things could be worse.
"According to the doctor, I'm a moderate to slow progressor," he said. "Unfortunately, everyone who has ALS faces a grim prognosis. It's a race against the clock, with me especially, they don't know. Fifty percent of people with ALS die between 1-3 years of diagnosis, 40 percent die between 3-5 years and 10 percent live 5 years and beyond."
Instead of focusing on those statistics, Mazareas has focused on funding research toward a cure for ALS - something he realizes might not come soon enough to affect him, but help others like him.
On April 2, Mazareas, his friends and his family will hold an ALS fund-raiser for The Angel Fund at the Nahant Country Club.
"The important thing is that a group of friends and family got together and that's a very humbling experience," he said. "I really appreciate everything that the community is doing. The event committee thought they'd raise $50,000, which would be unbelievable."
Mazareas said ALS research could impact a host of debilitating diseases.
"One unfortunate fact is ALS research is woefully under funded because of the label as an orphaned disease, but the reality is that if researchers can unravel the ALS puzzle, it's a know fact it will impact Alzheimer's, Parkinson's, muscular dystrophy and other muscular diseases," he said. "Every dollar that we raise will have a profound impact on ALS research, specifically the lab that the Angel Fund supports, which is under the supervision of the world's leading ALS researcher."
"There are currently 14 major projects under way," he continued. "If any one of those comes through, there will be some clinical trials and breakthroughs. There are a lot of positive things developing."
Tickets for the fund-raiser are $25 and can be purchased at the door or through the following event committee members: Nick Kostan 781-593-1680, Andy Papagikas 617-312-0727, Bill McDonald 617-784-4820, Tim Phelan 781-598-1673 ex. 4, Mike Kimec 781-284-4182, George Bakas 617-417-3271, Vinny Phelan 781-598-1673 ex. 2, Dave Hegan 781-598-3248, Mike Holland 781-913-6629, Peter Laskaris 617-480-7020, Dan Dill 781-598-3248, John Mekis 781-256-9200, Nick Primpas 617-308-6924 and John Mihos 781-581-5313.

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