23 Aug 2014
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Justin Weiss Planning Biggest Fundraiser Yet

East Meadow resident with MS finds great comfort and pleasure in doing what he can to help others living with the disease.

Justin Weiss Planning Biggest Fundraiser Yet Justin Weiss Planning Biggest Fundraiser Yet
After his Mom died of complications from Multiple Sclerosis at age 53, Justin Weiss turned his back on the disease after doctors quelled fears that it was hereditary.

"Sure, we donated to the MS Society from time to time and often attended the walks, but rarely gave it a thought," the 15-year East Meadow resident said.

It wasn't until Weiss began experiencing numbness in his hands and right foot that his fears resurfaced. "I went to see my regular doctor and his initial diagnosis was everything from a pinched nerve, carpal tunnel to anxiety and depression," he said. "When I was struck down with a weakness like I had never felt before I became very alarmed. I knew deep down what was wrong. I knew it was MS."

Everyone, including his doctor and wife, thought he was overreacting. But an MRI of the brain and spine confirmed his fears. "Just like my Mother, I had MS too," he said.

Weiss was diagnosed with Relapse Remitting MS, the most common type. That was five years ago.

Living with Multiple Sclerosis has had its moments of anguish and depression. But it's also given Weiss a deep motivation to help and inspire others.

"You might have MS, but MS does not have you," he said. "You can still live a long fulfilling life."

And that's just what Weiss intends to do.

After his diagnosis, Weiss attended the MS Pooch Parade at Belmont Lake State Park with family and friends, raising approximately $400 for the MS Society.

"As we were walking along, we kept seeing small posted signs bearing the names of the individual walking teams. One of my friends shouted out, 'Hey Justin, we need a team name!' The rest of the afternoon we were all coming up with different ideas for a team name."

At the same time, Justin was looking for something to represent his fight with the disease, a "symbol to get behind."

"I have always been fascinated with mythology so when I came across a picture of a Phoenix on the Internet I knew immediately that I had found it," he said. "This would be something to help me get up after a fall. A symbol that will rise from the ashes and become anew."

Team Phoenix was born.

The very next year, the team was able to raise $1,200 for the MS Society. A Facebook page has since been created to help spread awareness and inspiration. Last year Weiss turned the MS walk into a 5K. Nearly $6,000 was raised. It was a banner year for Team Phoenix. Over the past five years, the team has raised approximately $10,000.

"We are looking to double that number this year," he said. "It might not be realistic, but you have to have goals."

Team Phoenix is planning its biggest fundraiser yet, to be held Feb. 27 at Bounce Trampoline Sports in Syosset between 5-7 p.m. Regular admission is $25 but a guest of Team Phoenix will receive 20 percent off. The event will include trampoline dodgeball and basketball, bungee jumping and more.

"To be honest, I have never been so excited for an event," Weiss said. "You will be having too much fun to even be aware that you are helping out a great cause."

All the money raised by Team Phoenix, which will include a large portion of the admission price, will directly benefit the MS Society.

Weiss will never give up and has this advice for those also diagnosed with MS: "Eat right, stay active and never lose hope for a better tomorrow. (Although I have to keep working on the eating right part, myself. I have a bad addiction to bacon cheeseburgers and Double Stuffed Oreos.)," he said.

"No two people are affected by this disease the same. You will have good days and bad ones. Surround yourself with good people. Accept your new life as if you chose it. Always work with it, not against it. Make it your friend not your enemy. This will transform your whole life."

Weiss knows he cannot change what has happened to him, and despite those moments of anguish and depression he finds great comfort and pleasure in doing what he can to help others.

"There is no need to be perfect to inspire others," he said. "I’ll let others be inspired by the way I deal with my imperfections."

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