Architect Phil Freelon wants to ‘Design a World Without ALS’

In between design work on nationally significant building projects, renowned architect Phil Freelon of Durham wants to draw attention to the Duke ALS Clinic, where researchers are trying to find effective ways to treat amyotrophic lateral sclerosis.

Freelon, 63, was diagnosed with ALS in March, six months ahead of the opening of one of his crowning achievements, the Smithsonian Institution’s National Museum of African American History and Culture. The longtime runner had noticed some changes in his gait and became concerned.

In December, he and his family announced the formation of the Freelon Foundation and launched the Design a World Without ALS campaign to raise $250,000 for the Duke ALS Clinic. The foundation will hold an arts-and-music event at the Carolina Theatre in Durham on April 20, where it will present its gift to the clinic.

Reached by phone Monday while traveling in Havana, Cuba, with his wife, singer Nnenna Freelon, Freelon said he wants to help the Duke team financially in three areas: conducting clinical trials that might lead to better therapies or a cure; providing supportive services to ALS patients and their families and caregivers; and establishing an endowed position so the clinic’s director or another doctor can devote more time to defeating the disease.

Freelon, who generally eschews personal publicity, said he is lending his face to the fight against ALS because so many people still don’t know about the disease.

"If you don’t know about it, you’re not going to get involved," he said.

ALS attacks nerve cells and pathways in the brain and spinal cord. Patients lose the ability to control muscle movements, eventually resulting in total paralysis, while their minds usually remain sharp. A majority of patients die within two to five years of diagnosis.

Freelon is being treated at the Duke clinic, which is led by Dr. Richard Bedlack, a colorful neurologist who has published more than 60 articles on the illness.

ALS is a degenerative neurological disease that affects about five people per 100,000 in the U.S. It has proved challenging to researchers, who have not been able to name a definitive cause for it or find effective therapies against it since it was first identified in 1869. It’s also known as Lou Gehrig’s Disease, for the Yankees’ first baseman who died with it in 1941.

While it can strike anyone, it is more common among whites, males, and people aged 60 to 69. U.S. military service members are about twice as likely to be diagnosed with ALS as the general population. Between 5 and 10 percent of cases are of a hereditary type of the illness, and researchers have theorized many possible causes for the rest, including chemical exposures and repeated concussions.

Treatment protocols rely on one drug, Riluzole, which can slightly slow the progression of the disease but can’t reverse or stop it. Other medications are used to reduce muscle spasms, while vitamin and nutrition regimens can help maintain energy and specialized gadgets can compensate for some lost abilities. In later stages of the disease, some patients communicate using computers that translate eye movements into text and electronic speech.

Local television newsman Larry Stogner died with ALS in October.

Freelon said he is walking with a cane but continues to work full-time as the managing and design director of the North Carolina practice of Perkins+Will. Freelon joined the international architectural design firm in 2014 when it acquired The Freelon Group, which he had founded in 1990.

Freelon is known especially for his design work on public spaces and cultural institutions. In addition to the National Museum of African American History and Culture, which opened in September on the National Mall in Washington, he also worked on the National Center for Civil and Human Rights in Atlanta, and is presently working on Emancipation Park in Houston and an expansion of Motown Museum in Detroit.

"I’m able to fulfill my commitments," he said Monday. "My goal is to stay active, and keep things moving as long as I can."

Gifts to the Duke ALS Clinic can be made through http://nando.com/4e9. 　　

This story was originally published January 2, 2017 at 6:08 PM with the headline "Architect Phil Freelon wants to ‘Design a World Without ALS’."