Research Frontiers
Part 3

HD Research and the Public

Dr. Morimoto discussed his views on the responsibilities of a scientist to the public. “It is our responsibility and obligation to talk to the public about research,” he says. Dr. Morimoto wants patients and their families to understand how research on neurodegenerative disorders works: how scientists pose questions; how drugs and therapies are created; and why animal models like flies, worms, and mice, are used instead of humans at certain stages of the research process.

Dr. Morimoto explains that using a model system like C. elegans is helpful because this organism has a lot of important similarities to humans, but also differences that make them easier to study. C. elegans has a much simpler nervous system than humans. C. elegans has only 302 nerve cells, as compared to the human nervous system which can have 10 to 100 billion nerve cells. Although the C. elegans nervous system is less complex than ours, each individual nerve cell (as opposed to the whole system) is just as complex as a human’s nerve cell. C. elegans is good in vivo model for the Morimoto Lab, because they are focusing on protein balance and health within the individual nerve cell rather than an entire nervous system.

Dr. Morimoto believes that he and other academic scientists are fortunate because they can choose to focus their research on whatever interests them. They can be well-funded, but that gives them an obligation to educate people on how their money is being spent. Yet not all scientists are trained to do this. Dr. Morimoto believes that more effort is needed to increase communication between laboratory researchers and the public.

Dr. Morimoto is one of the 17 Huntington's Disease Society of America (HDSA) Coalition for the Cure Senior Researchers. He is committed to long-term HD research and collaborates with other scientists around the world who also study HD. Through the local chapter of the HDSA, HD patients and their families often contact him, and he will sometimes bring them to his lab to meet the postdoctoral fellows, graduate, and undergraduate students working to discover the mechanisms behind HD. Dr. Morimoto says that it helps him get a sense of clarity apart from his research, and he thinks that it is equally beneficial to the patients and their families. He also attends Illinois HDSA meetings to give talks. Since he knows that patients and families are always at these meetings, he tries to make his talks especially relevant for them. One of the great things about science, he says, is that all scientific information is accessible. And the local chapters of the HDSA get scientists to appreciate the public, to make sure that information reaches them in an appropriate way. To learn more about the HDSA, click here.

A unique feature of HD is that it is relatively rare compared to some other neurodegenerative disorders like Alzheimer’s and Parkinson’s (for more information on these diseases, click here). Because less people are affected by HD, there is less funding from the National Institutes of Health (NIH) devoted to HD. Dr. Morimoto says that the community of HD research advocates is amazingly strong and plays a big role is raising necessary money. As an example, he cites the Fiore family of Highwood, IL. The Fiores have a history of HD in their family, and have raised money for HD research by partnering with the HDSA and holding their own fundraising events like golf and poker tournaments (you can visit their site by clicking here). Their work has helped to raise money to open an HDSA Center of Excellence at Rush St. Luke Medical Center in Chicago. According to Dr. Morimoto, families like the Fiores have single-handedly used their personal adversity to “increase awareness of the disease for all.”

Last Modified: 03/28/2006

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