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Old 08-31-2006, 09:33 AM #1
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Default Raising awareness

Rockwell resident golfs for a cure


By Josh McCann
jmccann@independenttribune.com
Thursday, August 31, 2006



Jimmy Mastranunzio, 36, of Rockwell, adjusts his visor before the start of Wednesday's seventh-annual Celebrity Golf Classic at Kannapolis Country Club.
Greg Kahn (gkahn@independenttribune.com)



KANNAPOLIS - Jimmy Mastranunzio gets tired easily. Even eating can be hard at times.

Ever since he was diagnosed with Lou Gehrig’s disease in June of last year, little things like pinching or tying shoelaces can pose problems.

But it wasn’t difficult to convince the 36-year-old Rockwell resident to play a round of golf Wednesday.

Sitting outside the clubhouse at Kannapolis Country Club before the start of the seventh annual Celebrity Golf Classic, Mastranunzio’s eyes lit up at the mere mention of the game.

“Golf is great,” said Mastranunzio, who was hooked on the sport 15 years ago after one outing with friends. “They didn’t have to twist my arm very hard.”

One of about 140 players participating in the tournament, Mastranunzio said he’s happy to do what he can to raise awareness and support the cause of finding a cure for the fatal neuromuscular disease, which can make even the simplest movements of walking, speaking and gesturing nearly impossible. He even reluctantly made his first television appearance Wednesday in a live interview on Charlotte’s FOX affiliate.

“I’m happy I did it, but I’m glad it’s over,” he said.

When he was diagnosed with the disease, also known as Amyotrophic Lateral Sclerosis, Mastanunzio said he didn’t know much about it - but he knew it wasn’t good. Steadily, he’s learned more.

While Mastranunzio tries to keep up with a vitamin regimen that will keep him healthy, his doctors have told him the disease usually proves fatal within three to five years. A father of four, Mastranunzio is coming to grips with the grim prognosis.

“I was hoping that maybe they weren’t right,” he said with his two youngest sons seated beside him. “It’s starting to affect my body, but I seem to be able to adapt.”

His wife, Cyndi, said the family worries for him.

“Scary, I think, would be biggest word that I would use,” Cyndi said.

But Mastranunzio worries mostly about their future. He said he thinks often about his kids - ages 14, 11, 3 and 1 - and wonders.

On disability leave from his job operating a packaging machine for Frito-Lay, Mastranunzio spends more time with the children now than he ever could before, a benefit he termed “the upside to this terrible disease.”

As his ALS progresses, Mastranunzio strives to maintain his health and remain positive.

“There’s not really a whole lot you can do except sit and wait and hope,” he said.

He’s not entirely comfortable serving as the public face for the disease, but he proudly recounted his role in a fundraising walk in April. He pledged to continue fighting - particularly if he can hit a few balls while doing so.

“I’m just glad that there’s people out there that are trying to find a cure,” he said. “If not for me, than for somebody else.”

The event, cosponsored by the Kannapolis Intimidators and CT Communications, has raised more than $65,000 for the Jim “Catfish” Hunter chapter of the Amyotrophic Lateral Sclerosis Association since its inception. With final figures not yet available Wednesday afternoon, organizers said they had added almost $20,000 to that total this year.

• Contact Josh McCann at jmccann@independenttribune.com or at 704-789-9152
http://www.independenttribune.com/se...948&path=!news
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Old 08-31-2006, 09:42 AM #2
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August 30, 2006 01:02 PM US Eastern Timezone
The ALS Association Launches New TV Public Service Announcement Campaign; 24-Year-Old Man with ALS and The Association's Science Director Ask for Public's Help
CALABASAS HILLS, Calif.--(BUSINESS WIRE)--Aug. 30, 2006--Two new public service announcements (http://www.alsa.org/media/psa.cfm) promoting The ALS Association's Walk to D'Feet ALS(R) and aggressive drug discovery programs are among the most emotionally powerful PSAs ever released by the organization in the fight against ALS.


The 20 and 30 second PSAs feature a young man from Huntsville, Ala., who played in his high school's marching band and enjoyed backpacking before being diagnosed with ALS five years ago as a college freshman.

In the PSA titled "The ALS Association, ALS Can Strike Anyone: Join the Walk to D'Feet ALS," 24-year-old Eric Obermann and his family ask the public to join The Association's national signature fundraising event, the Walk to D'Feet ALS, and defeat ALS together. The PSA shows images of how Obermann looked as a teenager and his present condition, using a wheelchair and breathing with the assistance of a ventilator.

In both PSAs, Eric Obermann communicates with the help of assistive communications technology. Toward the end of the Walk PSA, the computerized voice asks viewers to "Please register today for the Walk in your area."

Obermann, who told his story to the U.S. Senate Appropriations Committee Subcommittee on Labor, Health and Human Resources, also appears in "The ALS Association, TREAT ALS: Discovering New Drugs for Lou Gehrig's Disease" along with The Association's science director, Lucie Bruijn, Ph.D. Both ask the public for its support for The Association's Translational Research Advancing Therapy for ALS (TREAT ALS). Headed by Bruijn, the new research initiative aims to move promising drug therapy approaches more rapidly into the clinic for clinical trials and then patient treatment.

"What makes these PSAs so special is the amazing young man, Eric Obermann, who appears in both," said Jeff Snyder, The Association's vice president of communications. "He had the courage to go before the cameras and record for the world to see the impact ALS has had on his life and his family."

The Association's two previous PSAs, prestigious Telly Award winners, have been seen by close to 800 million people in the last two years.

The Association is the nation's only national not for profit voluntary health organization dedicated solely to the fight against ALS.

Contacts
The ALS Association
Gary Wosk, 818-587-2241At A Glance
The ALS Association
Source: via Business Wire
Updated 02/03/2005 by company
Headquarters: Calabasas Hills, CA
Website: http://www.alsa.org
CEO: Gary Leo
Employees: 40
Organization: Non-profit

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