Hopes Development Team

On May 11, we attended the one year evaluation and celebration of the HOPES project. It was a special occasion that gave us an opportunity to greet old friends and to meet the most talented, dedicated, and hard working group of students anywhere.

Just one year ago, the HDAC team (Cristy, Steve, and Marsha) flew out to meet with Stanford University faculty and benefactors to discuss the development of a new Web site to provide up to date scientific information about Huntington’s Disease. Stanford University received a grant to establish a Web site about Huntington’s Disease. Searching the Internet to see what was currently available, the project team found the HDAC Web site, and asked to meet with us.

We spent an exciting weekend discussing Huntington’s Disease, the needs of the HD community, and the explosion of knowledge about the disease. The Stanford group decided to use undergraduate students to review scientific and technical material and translate the information into Web pages that could be understood by those who need the information the most - HD patients and their families. It was also agreed that Faculty advisers and specialists in the area would review the material before publication to insure accuracy and relevance.

The goal of the Stanford team was to “survey the rapidly growing scientific literature on HD and to consolidate this information into a coherent, reliable Web resource that reflects current scientific understanding of HD” and to “provide helpful information about the causes of HD, existing treatment options, and recent advances in HD research.”

We arrived for the one year follow-up meeting at Stanford University already impressed with what the students had accomplished. During the evaluation meeting, the students gave a professional Power Point presentation which showed how the Web site was developed, the creation of graphics, the use of peer and faculty review method, and the ways in which each member of the student team was able to use their skills. Faculty and benefactors as well as we all agreed that the work that the students had done was not only excellent but had exceeded all expectations.

We had had no doubt that the project would result in a significant contribution to the HD community but what we hadn’t anticipated was what it would mean to the students to be able to combine their interests in writing, science, and technology to make an important social contribution. Their commitment to and enthusiasm for this project was wonderful to see and it was clear that they would take what they’ve learned with them into future careers in medicine, law, and science. The HD community can only go on benefiting from their having joined our extended family.

The day ended up with a delicious dinner at the home of Dr. William Durham, faculty advisor. Members of the HOPES team and also the HDAC team were presented with clocks with the HOPES logo.

The HOPES student team members for the 2001-2 year are Amy Hsu, project leader, Matt Stevenson, Shawn Fu, Cathy Barnard, Joakim Vinberg, Elyn Tan, and Darwin Chen. Faculty advisors are William Durham, Ph.D., Joanna Mountain, Ph.D., and Belinda Fu, M.D.

Bookmark the HOPES site http://www.stanford.edu/group/hopes/ and keep visiting. It’s being updated all the time and new projects are being planned, including a section for kids.