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Mazareas's battle with ALS paints a profile in courage

Former hoop star now leading research drive

Once a professional athlete, George Mazareas, 45, no longer has the strength to lift his arm to greet his visitors with a handshake.

A basketball player who played ''above the rim" now walks only with the assistance of others, so weak that he worries his young daughter's exuberant hugs might send him toppling to the floor.

Mazareas, a Lynn native and director of the state's Office of Economic Assistance, has amyotrophic lateral sclerosis (ALS), commonly called Lou Gehrig's disease. He and his wife are hosting a fund-raiser for ALS research in Nahant on Saturday.

Mazareas first noticed the changes in his body shortly after he and wife, Cynthia, built a home in Nahant and had their first child, Eleni , 2 ½ years ago.

''I was getting, psychologically, into a new phase of life, with a newborn child and new home," Mazareas said, ''and then all of a sudden, within a few months, to have something like this . . ."

Cynthia laughed it off when George complained about snapping and unsnapping the fasteners on Eleni's clothes. He had trouble holding down strings when playing guitar, but attributed the weakness to a pinched nerve.

The couple thought the weakness also might be related to a recent surgery he had to restore the vision in one of his eyes, which required him to keep his head in a certain position.

Or, they thought, maybe these were the normal aches and pains of a weekend athlete in his 40s.

These days, while his speech is slurred and quiet, Mazareas's mind is still sharp. Buttressed by voice-activated software and a ''tremendous support staff," he goes to work every day, and also serves as cochairman of the Massachusetts Family Literacy Consortium.

The former two-term School Committee member in Lynn, who has spent many hours working on volunteer boards and for various community, church, and charitable endeavors, now has a new cause: raising money for ALS research and awareness.

Some of Mazareas's running friends established a race to support the cause in 2004. Named in memory of the mother of Red Sox pitcher Mike Timlin, ''The Sharon Timlin Memorial Race to Cure ALS" raised $57,000 last year and will be run again in June in Hopkinton.

Another friend organized the ''Angels for ALS Celebrity Fashion Show" in Natick in the fall of 2004, raising $15,000 for the Angel Fund, a Wakefield-based group that promotes ALS research.

The Lynn Lions Club also has pledged $10,000 from a 2004 golf tournament to the Angel Fund in Mazareas's honor.

Saturday's fund-raiser will take place at the Nahant Country Club and feature dancing and an auction. Coordinated by Cynthia, longtime friend Andy Papagikos, and a large group of other friends, it is expected to raise $50,000 or more.

''George and Cynthia are fabulous people," said Ann Hadley, a spokeswoman for the Angel Fund. ''If you talk to him, you can feel the warmth and courage the man has. He's so intent on raising money and helping to find a cure with research that you just go along with the momentum."

When organizing the event, Hadley said, friends said they hoped the hall was large enough to accommodate Mazareas's vast network of supporters.

''They think they'll have 300 people," she said. ''That's a lot of friends."

Angel Fund president Rich Kennedy said the disease usually demands so much time and energy from both the person afflicted and his primary caregiver, that there is little time left for health advocacy.

''It's atypical that they'd have this much energy to pull their friends together to run an event like this," he said. ''This is nothing short of heroic."

Mazareas is no stranger to adversity. He excelled in basketball and track despite losing sight in one eye as a 15-year-old. After playing college basketball at Tufts University, he had a seven-year career for the Pan Hellenios team in Athens. Active in the St. George's Greek Orthodox Church in Lynn, for years he played for a recreational league team composed mostly of Greek-Americans and for a church-sponsored team that played regularly in the National Hellenic Basketball Tournament in Chicago. On Saturday, he will be inducted into that tournament's Hall of Fame.

''I still get inspiration and direction from him," said Papagikos, a close friend. ''He's never lost his sense of humor, and never lost his pride and dignity in the most trying of times."

Mazareas has brought both his personality and his intellect to his current situation, said Dr. Allan Ropper, his physician, based at St. Elizabeth's Hospital.

''He's astute and thoughtful about his illness," said Ropper, who noted that Mazareas has promoted dialogue among those in the field as well as increased public awareness.

He's also an engaging personality, Ropper noted, ''the guy you'd want as a supportive friend if you were sick. Even though he's sick, he enlivens the people around him."

According to the ALS Association, ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy.

After the initial shock of the diagnosis, Mazareas said, he realized there were some things to be grateful for, including the fact that he has a slow-progressing form of the disease. Many patients die within two years.

''As bad as things were, they weren't that bad, because I now had somewhat of a fighting chance, with the research being done," he said. ''That's when I realized I needed to make the most of my time," both with his family and to fund research that could possibly benefit him.

''It's a great time for any medical research," said Kennedy, the Angel Fund president whose organization funds research at Cecil B. Day Neuromuscular Research Center at Massachusetts General Hospital. ''We're seeing the marriage of computer technology with medical science, and things are happening at a faster rate. Money that is raised is put to much better use than it ever has in the past."

Medical research is full of dead ends, Ropper said, but the improvement in research tools coupled with the application of great minds to the study of neurodegenerative diseases has created optimism among those dealing with ALS, Parkinson's, Huntington's, and Alzheimer's.

''It could happen tomorrow and could happen in 30 years, but what is very clear to even the most conservative individual is that this is going to happen," Ropper said. ''These diseases are going to be understood."

For tickets, $25 per person, or other information about the Saturday fund-raiser, contact Kevin Donahue at 781-718-2409, Timothy Phelan at 781-598-1673, Bill McDonald at 617-784-4820, George Bakas at 617-417-3271, Nick Primpas at 617-308-6924, or Andy Papagikos at 617-312-0727.

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