ALS hits close to the heart - | WBTV Charlotte

ALS hits close to the heart

(Maureen O'Boyle | WBTV) (Maureen O'Boyle | WBTV)
CHARLOTTE, NC (WBTV) -

In August of 2014, I, like a lot of people, was tagged in the ‘Ice Bucket Challenge’ to raise money and awareness for ALS, also known as Lou Gehrig’s disease. I asked my neighbor and good friend, Valerie to do the deed.

So, on a hot August day before work, Valerie poured a large bucket of icy water over my head.

Of course we giggled. It was funny. Because the reality of ALS wasn’t there that day. It wasn’t present in our lives in any way. We didn’t know anyone who had it. We’d never witnessed up close, the terribly cruel way ALS ravages a person’s body.

Fast forward just about thirteen months and Valerie said we needed to talk.

“Doctors think Nick, (her husband), has ALS,” she told me.

My heart sank, then my heart broke. “It must be a mistake. How can they be sure?” I just kept saying through tears and hugs.

We’d never expected ALS to touch either of our families. Never! Because ALS is not common. According to the ALS Association, also known as ALSA, they estimate about 30,000 Americans have the disease at any given time. 

For Valerie, Nick, their daughters, and sons-in-law, the last year has been filled with so many unanswerable questions about this awful disease. How fast will it change Nick’s body? How much time does he have with us? We’ve watched a strong, smart, and stubborn man, fight this disease and fight hard.

What we know about ALS is, it’s robbing Nick’s muscles of nourishment. That causes the muscles to atrophy, or waste away. Every case is different. No two families have the same story. No two patients have the same progression. You hope for the best and fight like mad.

You also must rely on good people to help you, people who know the road ahead, and understand the hardships of this disease.

Good friends and family have been there for Nick and Valerie. And they’ve also been guided on this difficult journey with the help of the Joe Martin ALS Foundation. The organization is named after Joe Martin, who served as the Principal Corporate Affairs Officer at Bank of America, he also had ALS.

According to the foundation’s web site, Joe was told in 1994 he had 20 months to live. Instead of trying to survive and ‘beat’ the disease, he wanted to survive the diagnosis and live the fullest life possible. That’s where his foundation comes in to the lives of families like Nick and Valerie’s.

Saturday, Frank Deaton, a man who is on the Joe Martin Foundation Board, threw a barbeque fundraiser to support the work of the Joe Martin ALS Foundation.

“Frank is an energetic and caring guy.  He saw a 60 Minutes story on ALS and he decided he wanted to help people facing this disease.  He wanted to help a local ALS organization so he contacted us.  He also supports ALSA,” Neil Cottrell, president of the Joe Martin ALS Foundation told me.

“I’m just so happy we’re having such a great turnout,” Frank told me as we all enjoyed live music and some real southern BBQ, (eastern North Carolina style).

Neil said it was an impressive effort. Just under seventy-five hundred dollars was raised. Every penny will go back directly for the services to help families like Nick and Val’s.

"There have been some breakthroughs in researching a protein to target for making drugs to fight the disease,” Cottrell said.  “We are getting closer to cure for ALS, but we are not getting there fast enough."

That’s where his non-profit steps in, “Until there is a cure. The Joe Martin ALS Foundation, seeks to improve quality of life for those fighting ALS by providing free home care services,” Cottrell said.

After the BBQ, Nick showed his true grit. He and his son-in-law, Diego, and Diego’s twin brother Eric, drove from Charlotte to Cincinnati. You see Nick’s team, the Chicago Cubs were playing the Reds. It was the perfect day for a ballgame.

So hundreds of miles and eight hours later, they made it. The guys enjoyed a great day at the ball park Sunday. Nick keeps showing us he is determined to live his best life possible!

Cottrell said they welcome the kind of efforts Frank and his fiancé’ made at Saturday’s BBQ. Neil encourages anyone interested in holding a fundraiser contact Sarah Hayden at 704-332-1929. Or email at sarahhayden@joemartinALSfoundation.org.

May is ALS Awareness month, Neil invites the community to come join the foundation at Park Road Park on May 20th from 5-8pm for another cookout.

For more info, visit joemartinalsfoundation.org.

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