The Duke University ALS Clinic and the Freelon Foundation have announced a partnership to expand the school’s research on amyotrophic lateral sclerosis (ALS). The partnership will involve establishing an endowed professorship, providing funding for clinical trials, and increasing the number of patients the clinic can treat.
Phil Freelon, who founded the Freelon Foundation and leads the design team at the Smithsonian National Museum of African American History and Culture, will also make his Design a World Without ALS campaign available for collaboration.
“The (Design a World) campaign’s title is a call to action,” said Freelon, who was diagnosed with ALS in March. “I speak for other designers and anyone in general who would like to see an end to this disease.”
A fundraising campaign aims to raise $250,000 for the clinic by April 20. The campaign will culminate with a benefit concert at the Carolina Theater in Durham, N.C.
“They say it’s an incurable disease, but I would say it’s an underfunded disease,” Freelon said. “With the kind of resources that other causes have been able to garner — let’s say heart disease or cancer — there’s a lot more money flowing into that research.”
Duke was one of the first universities in the United States to establish a clinic dedicated to treating ALS patients, doing so in 2001. Patients have access to a social worker, a nurse who specializes in clinical research, and a multidisciplinary team of experts. They work on communication, swallowing, nutrition, and breathing therapies, as well as physical therapy.
The clinic also hosts trials for alternative therapies, which are not well-funded and are sometimes considered controversial, said Richard Bedlack, MD, PhD, an associate professor of neurology and the clinic’s director.
Bedlack said he was inspired to pursue alternative therapies after talking with some of the clinic’s patients.
“I recognized early on that people would go home from our clinic and go on the Internet, and they would try things that they read about on the Internet,” he said.
He established the ALSUntangled program to examine some of those therapies and determine their effectiveness.
“I really think there could be a clue here on how to make other people (with ALS) better,” he said.