Research Frontiers

Dr. Ron Kopito and Dr. Brigit Riley

Getting involved in the HD community

For some time, the Kopito lab was very interested in studying IBs in general. They were not interested in how IBs were related to specific diseases (like HD), since they were found in so many different genetic disorders. Rather, the lab was using lots of different disease models to study IBs- from Cystic Fibrosis, to HD, and more. But in 1998, the Huntington’s Disease Society of America (HDSA) asked Dr. Kopito to give a talk at a conference on his work with IBs. He went to several of their meetings, met many researchers and patients who were part of the HD community, and found the HDSA to be a “cohesive, vibrant organization”. Dr. Kopito says that the HD community and the HDSA are remarkably well-organized and mobilized, much more so than many organizations involved in advocacy for other disorders.

At these HDSA meetings he saw that many people, scientists and non-scientists alike, attended and participated. The HDSA gives grants for research, and encourages scientists to become involved in the advocacy and politics of HD. When he saw how patients, their families, and advocates supported scientists involved with HD research, Dr. Kopito became very motivated; a few years later, he decided to concentrate on HD more seriously. He has been focusing his research on the role of IBs and the proteosome in HD ever since.

Last Modified: 09/11/2007

An educational product of HOPES, not to be used in place of medical care. For more information about HOPES, click on the Logo. To contact HOPES with comments or questions, click here.