Tim Johnson was at a Statesville, N.C., car dealership buying four new trucks for his growing landscaping company, Tim Johnson Landscaping. The sales manager had been asking him for years to bring his 6-year-old son, TJ, to the dealership, and this was the day. 

“I called my wife, and I said, ‘Hey, when y'all get out of school, bring TJ up here,’" Johnson, President at TJL, said. 

While Johnson was signing the papers on the newest additions to his fleet, the sales manager came into the room, almost in tears. 

“And he's like, ‘I need to look at life differently,’" Johnson said. “He said, ‘I get up in the morning and talk about my knee hurts or my back hurts, or whatever else.’ And (TJ) comes in and is so excited and so happy." 

And that, Johnson says, is his son’s superpower. 

“If you meet TJ and your day doesn't get better, then there's something wrong with you,” Johnson said. “His smile lights up any room he's in.”

That TJ can do that, his father says almost matter-of-factly, is also amazing. TJ has a very rare form of leukodystrophy called DEGS1. 

“We're talking about a disease that, he's 6, he should be dead,” Johnson said. “Just being honest, there’s a 74% chance of him being dead.”

Instead, he’s impacting everyone he meets. And soon, if all goes according to plan, a lot of kids he has not met yet. 

‘What are you doing for 40?’

Tim Johnson turns 40 on July 26, 2026, and until recently, he had not given much thought to that milestone. 

The annual Thought Leaders Retreat with his peer group through Wilson360, though, is always the same week as his birthday. At the 2025 event, he had lunch with Justin Martin, CEO of Granite Hills Group in Charlotte, like Tim Johnson Landscaping, an Aspire customer. 

“I told him I was turning 39, so he looks at me, without hesitation,” Johnson said. “He's like, ‘So what are you doing for 40?’ 

“And I said, ‘What do you mean?’" 

Martin told him what he had done for his 40th, which included training for a marathon. Johnson was impressed, but didn’t have a plan and didn’t think much about it. 

His brother-in-law, though, changed that when he told Johnson what he had planned for his own 40th birthday, in December.

His brother-in-law Nathan Frantz eclipsed the fastest known time for an out-and-back on the Foothills Trail, covering 150 miles in 49 hours, beating the known record by more than 10 hours. And he did it in honor of TJ.

“I was like, hang on a minute,” Johnson said. “It doesn't have to be about me. Everything is bigger than me. What can we do?"

He came up with an idea: For six months, from Jan. 26 to July 26, Johnson’s 40th birthday, he would walk 10,000 steps a day – about 900 miles in total – to raise awareness for his goal of raising $40,000 for leukodystropy research, to help kids like TJ. 

And 40-for-40 came to life. 

A chance to change the outcome

There are more than 40 kinds of leukodystrophy, which affects how the white matter forms in the brain, but they all fit in one of two buckets.

Bucket No. 1, the better bucket, affects how the white matter forms, but doesn’t attack it.

The second bucket is degenerative, not only affecting it, but actually attacking the white matter. TJ has a very rare form of leukodystrophy called DEGS1, and patients with DEGS1 have always been in the second bucket.

Worldwide, there are fewer than 100 known active cases of DEGS1, considered one of the most cruel of all leukodystrophies, largely because of the 74% chance patients with DEGS1 don’t live past the age of 6.

Dr. Adeline Vanderver, the head of the Leukodystrophy Center of Excellence at the Children’s Hospital of Philadelphia (CHOP)  and considered the top leukodystrophy researchers in the world, wants to change that. 

Under Vanderver, Dr. Giulia S. Porcari and the team at CHOP, TJ is in a compassionate use trial of fingolimod, a medication for multiple sclerosis so common and around so long that it’s available as a generic. The hypothesis of the researchers at CHOP is that the off-label use of fingolimod for DEGS1 patients will make the condition substantially less degenerative. 

All five of the previous patients in the Fingolimod trial were in Spain. TJ was the first child in the United States to get fingolimod for this use, and the hope is his case will pave the way for other CHOP patients with DEGS1 to trial fingolimod, too.

“I’ll do anything I can to open any door for him,” Johnson said, “I am not the richest person on the planet by any stretch of the imagination, but I'll also not shy away from the fact that I have access to resources and a lot of people don't.

“If there's a way that I can use those resources to help people who can't, that's what I want to do.” 

And that’s what 40-for-40 aims to do, for as many kids like TJ as he can. 

‘He has worked really, really hard’

TJ likes anything to do with construction, especially vehicles that dig. He spent a day in Clayton, N.C., at Caterpillar’s Global Operator Challenge, as an honorary safety officer, riding on equipment and meeting motocross stunt rider Jarryd McNeil.

He plays Miracle League Baseball. And in school, he’s in a mainstream classroom with a full-time, one-on-one aid, and was within range of grade level in his mid-year assessment. 

And, always, there’s that smile.

“You look at him and you see everything in his life that has been stacked against him,” Johnson said. “And then you see his outlook on it. 

“I've learned so much from him and been inspired so much by him. We've opened a lot of doors for him, but he's also had to want to work to get to where he is.

“Does he have to have a lot of extra tutoring and help, and does it look very different for him? Absolutely. But he has worked really, really hard.”

Johnson said he wants to do the same, for other kids.

How to help kids like TJ

Johnson’s 40-for-40 project is the next step. While the CHOP Foundation carries the 501(c)(3) for the fundraising, Johnson and his wife, Jenni, can dictate what fund inside CHOP that money goes to. 

They’re directing it to the DEGS1 research fund to help kids like TJ. 

And they’re on the way. A quarter of the way through, just shy of $15,000 had been pledged for DEGS1 research. 

Aspire has committed to a matching donation, and there are other matching deals in the works, Johnson said.

“We're going to get there, and we're going to get there in a big way,” he said. “And it's helping. It is going to, in short order, help other kids.” 

There goes TJ again, lighting up the room. 

“He's a special kid,” Johnson said, “and anytime I get to share his story and talk about him—and hopefully the doors that he's ultimately going to open for some other kids—it's always something I like to do.”

Leading into his 40th birthday, that’s what Johnson is doing: 10,000 steps at a time.