When anthropological sciences professor William Durham first tried to explain Huntington’s disease to friends who had the gene in their family, he found the typical scientific explanations lacking.
“I told them it was a trinucleotide repeat disorder,” he says. “And they asked, ‘What’s a nucleotide?’ ”
So Durham, ’71, rooted around and found more information on the neurodegenerative, genetic disease. He crafted an explanation for people who knew little more about DNA than its double-helix shape, and e-mailed it to his friends.
Durham’s initial effort soon turned into the Huntington’s Outreach Project for Education at Stanford (HOPES), a student-run website launched in 2001 to educate the public on the science behind the disease.
Huntington’s disease strikes roughly one in 10,000 people. Although their offspring have a 50 percent chance of inheriting the disorder, patients often don’t know they have the disease until midlife, after they have had children. Some symptoms can be treated, including uncontrolled movements and psychosis, but the disorder is usually fatal.
Because Huntington’s disease is relatively rare, it gets little media coverage, says Matt Stenerson, HOPES project leader and human biology teaching assistant. He believes someone needs to make current research accessible to patients. “I’m not a lab rat,” says Stenerson, ’03. “I’m someone who likes to see the application [of the science] and pass on information to provide peace of mind.”
Six to eight students and recent graduates work part time on hopes.stanford.edu year-round, and they’ve written more than 100 detailed and peer- and professor-reviewed pages so far. The site includes tutorials on the brain, explanations of stem-cell research and, soon to come, a “for kids” section.
The site benefits not only the public, but also its creators. Shawn Fu took a research and graphic design job with HOPES the summer after his junior year. The work helped confirm his decisions to major in biological sciences and apply to medical school. “It has really been one of the things I’m most proud of that I did while I was in college,” says Fu, ’03.
“It’s a great way students can share their enthusiasm for science and the thrill of understanding to the rest of the world,” says Durham. Including those trinucleotides, which, incidentally, are little portions of DNA that can cause harmful mutations in proteins.
