It's a Here & Now tradition that began in 2015 when the show first aired a holiday story about Boston's Christmas in the City, the world's biggest party for homeless children.

Since then, we've been sharing those kids' joy with our listeners, just as Christmas in the City has continued throwing its massive holiday party.

The event, founded as a 100% volunteer nonprofit by Jake Kennedy and his wife Sparky Kennedy, kicked off in 1989.

As Jake Kennedy explains, it started when their daughter was 2 years old.

"She got too many presents so she had no idea what Christmas meant and you know, we wanted to show her the other side of life, he says.

The first time they held Christmas in the City, the event was small, with only a few hundred kids at their family business, Kennedy Brothers Physical Therapy. Over time, the event took off.

By 2015, the number was around 4,000 people, and this year, about 6,000 kids were in attendance. The event is packed with presents, food, carnival rides, face painting, and of course, a visit from Santa Claus.

Jake told us in 2015 the event made him emotional.

"You don't understand people who have to wait in line, that no promises are kept, they don't know what school they're going to, they don't know where they're going to live, they don't know where the next meal is coming from, he says. What it means to be treated like princes and princesses."

"I wouldn't miss it," he continued. "I wouldn't miss it."

Speaking to him last week, the enthusiasm and the spirit are the same though his voice is lower, his speech slightly slurred. Because the man who's dedicated his life to fighting others' battles is now fighting his own.

He's been diagnosed with ALS also known as Lou Gehrig's disease an insidious disease that leaves the mind intact but ravages the body. Jake's father died of ALS, as did Jake's younger brother he called Squirrel. Another brother, Ratt, also has the disease.

Sparky says the diagnosis didn't come as a surprise. In fact, when the first symptoms appeared, she said she knew immediately.

"Jake was tested for the gene about five years ago. October 11 was when it was confirmed it was the ALS, she says. I noticed the symptom of stuttering speech the very last week in August, actually."

Jake and Sparky said they had a brief reprieve when Jake tested positive for Lyme disease, which could have produced that symptom. But in the end, it turned out that they were facing ALS.

Despite the diagnosis and the family history, Jake is anything but defeated. "I'm very optimistic about a cure," he says.

This is a time like no other time in research. And Dr. Brown, Zack, they are so optimistic, he adds.

Hes referring to his son Zack, a post-doctoral researcher at UMass Medical School in Worcester, Massachusetts, and Dr. Robert Brown, director of Neurotherapeutics at the University of Massachusetts.

The two are working together on ALS research.

"Approaches now for treating familial disease are very powerful in terms of inactivating the genes that cause this to run in families," Brown says. "So there's more hope for familial ALS then there's ever been."

Brown says it's also exciting that the lessons from the genetic forms of ALS also apply to the other 90% which are not familial. Zack adds that there are clinical trials that may benefit his father.

For Zack, family history was among the factors that drew him into ALS research.

"It's very motivating to know that your work will go into helping your family for sure," he says, growing emotional. "There are ups and downs, it gets heavy, but nothing good comes easy."

Zack says he's impressed with how his family, particularly his mother, are handling the new reality scheduling doctor's appointments, dealing with insurance and remaining positive.

Sparky says she's just taking it one step at a time. "Putting one front in front of the other is how I'm doing it right now, she says.

In some ways, Jake says Christmas in the City has given him the perspective he needs to deal with battling ALS.

"Because of the Christmas in the City, I feel how unjust society is, he says, so I think other people are far worse off than I am, right?"

"We talked about this before you were diagnosed. If I died tomorrow, I would have had the most blessed life ever, Zack says. And life's not fair."

"And so you just have to count your blessings and take it day by day, Zack continues, his voice trembling. And I think you'd agree that we've had such a blessed life. And it's very easy to forget that and it's easy to get angry.

Yet Jake calls his 65 years on the Earth a total blessing. He mentions his four children and their spouses, who have brought so much into his and Sparky's lives.

Jakes wish moving forward is for people to reach out and change society forever. So many families are socially and economically disparaged and I want that to end."

"We want research money and we want to find a cure, Sparky adds, and we're going to remain hopeful."

When the topic of testing is raised, Zack again is emotional. He says he was tested and is negative meaning he does not carry the ALS gene. The couple has a new baby.

"It's the most wonderful blessing," he says in a whisper. "But it's hard thinking about your siblings."

Click here for the Jake Kennedy ALS Fund.

See the article here:
Christmas In The City Thrives As Founder Battles ALS - WBUR

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