Spreading Hope: How a professor and Stanford students built an accessible Huntington’s Disease resource
By jacob Cole holderman
Emeritus Professor Bill Durham is a legend in Human Biology. A former graduate of Stanford University, Bill has been with the Human Biology Program since 1977, where he has carried out research on environmental anthropology, the challenges of sustainable development, and conservation issues in Galapagos, authoring multiple books and publications. But perhaps the most surprising moment of his career came in 2001 when a friend called Bill about a rare ailment that had just been discovered in his family.
That ailment turned out to be Huntington’s Disease (HD), an inherited neurological disorder caused by the expansion of a repeating section of a gene, the huntingtin gene, that leads to progressively worsening movement and cognitive problems. The symptoms of the disease normally appear between the ages of 30-50, though there is a form of the disorder that effects children and teenagers. Because of the late onset of symptoms, and the similarities between HD and other neurodegenerative diseases, it is not known how many people suffer from the disorder worldwide, though estimates place the disease as occurring in 1 in 10,000 people. HD is usually fatal, and to this day there are few effective therapies for the condition.
The friend had contacted Bill to ask for more information about this new and frightening disease affecting his family. Bill first attempted to explain the disease using the typical scientific explanation, but he found it unhelpful. “I told them it was a trinucleotide repeat disorder,” Bill recalled, “and they asked, ‘What’s a nucleotide?’”
Bill realized that the challenge was to offer an accurate, nontechnical explanation of HD for the general interested reader. When he wrote up a 5-page summary and emailed it to his friend’s family, they shared it widely with family, friends and even their physician. From this community, Bill learned about the lack of accessible HD information available at the time in books or on the web. They asked if he could write up more about etiology, treatments, dietary supplements, and prospects for a cure. It was then that Bill had an idea: what about getting together a group of undergraduate students to survey the scientific literature on such topics, and to “translate” it to accessible language for a public audience? Would this make a useful website?
Bill invited representatives from several popular HD-centered websites, including Huntington’s Disease Advocacy Center (HDAC) and the Huntington’s Disease Society of America (HDSA) to talk about what was missing in HD outreach. “We had them come to campus for a meeting and we said, ‘tell us about your websites, what do you cover and what do you leave out?’” Bill said, remembering the meeting in May of 2001. “You could see that no one was focused on the science behind HD.”
Seeking an accessible way to educate patients and their families about HD research, Bill began to recruit students to help with a new project. The HD Outreach Project for Education at Stanford, or HOPES, was founded, and before the end of the summer the first four students had put a basic website up online.
The new initiative was a unique organization. With Bill as advisor and chief editor, the students picked up and ran with the idea, organizing themselves into researchers, graphic artists, and web designers. The site flourished and reached a million readers by 2007. The group has gone on to publish hundreds of peer-reviewed and professionally reviewed articles online in its 16-year existence, which have reached patients and their families in 47 countries.
HOPES doesn’t just add to their ever-more informative web-resource – now with sections for children and for international readers -- they also organize outreach events both with the HD community, and with the general public, to raise awareness about HD research and science. HOPES hosts an annual public conference where HD researchers and therapists can present their work to families and patients with HD. In recent years HOPES has collaborated on fundraisers with HDSA, and put together materials for schools and teachers teaching their students about HD.
In Durham’s words, “It’s a delightful example of how the educational process at Stanford can benefit a larger public. Not only are the student’s learning with each article they write and each meeting they attend, but their education is then shared via the website with the broader world. The students have received literally hundreds of ‘thank you’s” from all around the globe.”