Architect Phil Freelon Lives "New Normal" With ALS

Apr 25, 2017

Phil Freelon is one of the most acclaimed African-American architects of his generation. While his work is known nationwide, he's called the Triangle home for many years. It’s where the NC State graduate raised his family and built his firm.

Now, business and civic leaders and friends are mostly just celebrating Freelon, after he was diagnosed with ALS last year.

One of the biggest celebrations in was held last week in Durham, at the Carolina Theatre. His biggest fan, his wife of 37 years, Grammy-nominated jazz singer Nnenna Freelon, was by his side.

“It’s very clear, our love is here to stay!” sings Nnenna Freelon, while her husband and hundreds of others looked on.

The concert, "Design A World Without ALS," was a benefit to raise money for research at the Duke ALS Clinic. Freelon was diagnosed with ALS last year. The neurodegenerative disease, also known as Lou Gehrigs Disease, has no cure. Since the diagnosis, the Freelons say they've experienced an outpouring of love and support.

“We are here to celebrate! Ya’ll with me! Whooo!" said Nnenna Freelon. "Look around, this is what community looks like. Love it.”

Nnenna Freelon performed at the benefit but she also brought in career-long friends to help like Violinist Regina Carter, singing group “Take 6,” and “The John Brown Little Big Band.”

Poster of Nnenna and Phil Freelon promoting the 'Design A World Without ALS' benefit concert, April 20, 2017.
Credit Freelon ALS Fund

Phil Freelon is known for working and running non-stop. He recently helped celebrate the opening of one of his most iconic projects: the Smithsonian’s National Museum of African-American History and Culture.

But the 65-year-old avid jogger can no longer move as quickly. In recent public appearances, he's entered the room with the help of a walker, the kind with two handles and wheels.

Lew Myers worked with Phil Freelon for nearly 20 years as his Director of Business Development at the Freelon Group. It was once one of the largest black-owned architecture firms in the country. The Freelon Group merged with Perkins + Will in 2014. Myers remembers sitting down for breakfast with Freelon last April.  

“We sit down and he says Lew, I have to tell you I was diagnosed with ALS. 7:30 in the morning, what do you say?" said Myers.

Myers says he was shocked.

“My first thought was 'Phil, you stop whatever the heck it is you’re doing. You and Nneena just spend the rest of your time together, spend all your money'," said Myers. "I didn’t even get that out and Phil comes with, typically Phil – 'Well, I got to get the business straight, I got to get this done. I got to get that done.' I’m thinking, 'No, you ain’t got to do a dat blang thing'.”

But that wouldn’t be Phil Freelon. Here he is during a recent interview on WUNC's "The State of Things."

“You try and figure out what is the new normal going to be," said Phil Freelon. "We decided early on that it was not in our nature as a couple or as individuals to retreat into some shell and pretend to hide the truth.”

At the event, Durham Mayor Bill Bell present Freelon with a key to the city. By the time the night was over, Bell also proclaimed the day "Phil Freelon Day" and State Secretary of Veterans Affairs Larry Hall presented the honored guest with the Order of the Long Leaf Pine, among the most prestigious awards bestowed by a North Carolina governor. Surrounded by his wife, children and grandchildren, Freelon was humbled, but still had jokes.

“Thank you for coming out this evening, what a terrific turnout! Gosh, there are a lot of people here, and a lot of architects!" said Phil Freelon to much laughter. "Doesn’t ALS stand for Architect Lecture Series or something. I can bring out some slides and talk about museums!"

Freelon’s work is open, full of light and welcoming, no matter who it’s for – from the latest Smithsonian museum in Washington, D.C. to the city bus depot in Durham.

And for now, he continues to work. Among his current projects: the North Carolina Freedom Park in Raleigh and the Motown Museum in Detroit.