Durham architect battling ALS starts foundation for research, support
Posted December 23, 2016
Durham, N.C. — At any given time, 20,000 Americans battle amyotrophic lateral sclerosis, the degenerative neurological condition more commonly known as Lou Gehrig's disease. Renowned Durham architect Phil Freelon is one of them.
Just six months before Freelon’s most recent project, the Museum of African-American History and Culture, opened on the National Mall in Washington, D.C., he was diagnosed with ALS.
"Obviously, it was a shock and a disappointment," Freelon said recently. "I didn't know much about ALS and Lou Gehrig's disease, so I immediately, my wife and I, started researching what it meant."
Freelon said he has experienced problems with his legs and, within three to five years, he could suffer muscle loss and paralysis.
"I’m walking with a cane now. It’s a little more difficult getting around," he said.
Freelon is a man who has made a mark with his designs – he's currently working on a Motown museum in Detroit with legendary music producer Berry Gordy – and realizing that he soon may no longer be able to put a pen to paper, he has started the Design A World Without ALS foundation.
"It's a way to do something other than just think about myself and my situation," he said. "I want to be able to help others with this condition."
Freelon said he hopes his story can help to raise awareness for a disease that is not well understood. Scientists aren't sure what causes it and don't have a cure.
"The way I look at that, it’s not necessarily that it’s incurable. It’s that it’s underfunded," he said. "There probably is a cure somewhere down the road, but ALS doesn’t have the power of fundraising behind it as, say, heart disease or cancer or even AIDS because there aren’t as many people afflicted with this."
ALS was in the national spotlight in 2014 when millions of Americans participated in the Ice Bucket Challenge to increase awareness and fund clinical research
Design A World Without ALS aims to raise $250,000 for an endowment to benefit research at the Duke University ALS Clinic, as well as to support ALS patients and their families. The foundation will hold a benefit concert on April 20 at Carolina Theatre in Durham.
For Freelon, the last few months have been a time of adjustment. The man who has always been fiercely independent has had to ask for help.
"It's about making those adjustments and being willing to accept the love and support the people around me are open to giving," he said.
Freelon said the diagnosis has made him confront his own mortality.
"Well, we all have our limited times on this earth, don't we?" he said. "I'm not so much focused on why this, why this time, or why this particular affliction. I want to make an impact for as long as I can."