Man with ALS working to help others battling disease by creating memories in Las Vegas community

LAS VEGAS, Nev. (FOX5) - Also known as Lou Gehrig’s disease, a progressive neurogenerative disease that affects the nerve cells in the brain and spinal cord.

A new project that started after one man’s personal experience and his desire to help others.

“I have to use a chair and I can’t walk on my own and you can hear what it has done to my voice,” said Joey Porrello who was diagnosed with ALS.

Joey Porrello may not be able to walk or properly speak but he’s all smiles focusing on the good moments and those closest to his heart.

“I have a beautiful wife Ali and two kids,” said Porrello. “A two-and-a-half-year-old. A rambunctious little girl and a precious perfect little boy named Walden that is 5 months old.”

Joey said no one does ALS alone and his wife has been his rock.

“You really see and feel how much people love you when they respond to adversity, and she does it with such grace and compassion,’ said Porrello.

Yearly, over 5,000 people are diagnosed with ALS and the life expectancy is two to five years.

“You never know how quick or slow this is going to go,” said Porrello.

Joey said he bought concert tickets before his ALS symptoms started to quickly progress.

“When it finally came around, I could no longer get to the seats I purchased,” said Porrello.

When he tried to switch his general admission tickets to handicap tickets, he hit a roadblock.

“Their promoter had said we won’t refund your tickets,” said Porrello.

When the ALS association found out about this, they decided to do something.

“The one thing an ALS patient wants is time and we can’t give them time but we can give them memories and we are going to take the Porrello project named after joey and just turn it into a new program,” said executive director for ALS Nevada chapter.

A family facing an ALS diagnosis spends an average of $250,000 annually on medical bills alone.

Now, the ALS foundation says they want to help fund day-to-day needs whether that be home modifications, money for a date night or a concert.

“To give these terminally diagnosed people a reason to get out of the house and make a memory with their family and enjoy a night when ALS is not at the forefront,” said Porrello.

The Porrello project will launch in 2023. The ALS foundation received a grant of $50,000 to get the project off the ground but is always in need of donations.

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