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Doctor's Corner

By Martha Nance, M.D., Medical Director of the Huntington's Disease Clinic at HCMC

 

Annual HD Conference Overview -- in case you missed it!

The annual Minnesota Regional HD Conference was held in Golden Valley, MN on Saturday, September 27, 2008. About 80 people attended, and judging by the evaluations turned in at the end of the day, they enjoyed it!

This year’s conference focused on “finding the balance” while dealing with a disease that changes everything. Attendees heard from Elizabeth Giffin, recreational therapist, about strategies to relieve stress, ideas that were echoed and amplified by Guest Speaker Pat Samples, who has written several books about how caregivers can find hope, comfort, rest, and support.


2008 HD Conference attendees

Dr. Nance ended the morning with a discussion of what she thinks the keys to finding balance are: Learn, Do, and Enjoy!

Participants spent the lunch hour meeting new people and networking. A large contingent from North Dakota mingled freely with the larger group of Minnesotans, and all seemed to get along just fine! There were displays from the North Dakota genetics project, from the upcoming Hooves for Huntington’s fundraiser, the Steinert Hobby Farm for HD, and books by Pat Samples for purchase, as well as information about Huntington’s disease and the HD Chapters in the Upper Midwest.


2008 HD Conference


Dale Anderson, former president of the Greater North Dakota Association and member of the Board of Trustees of the North Dakota State University Development Foundation spoke of the plan to create a new chapter of the Huntington Disease Society of America, centered in the Fargo-Grand Forks area, to be called the Northern Prairie Chapter. There will be a “roast Dale Anderson” fundraiser on March 12, 2009, to raise money to start up this chapter; many North Dakota legislators and businessmen are expected to attend—and you can too!

The second half of the HD Conference was spent mostly in breakout sessions. Social worker Nina Ross led a session on preparing Advance Directives (for medical care), while attorney Lisa Pluto gave an excellent presentation on estate planning (all attendees rated her presentation as “excellent”!). Carol Ludowese, Hennepin County Medical Center Genetic Counselor, spoke about the genetic aspects of Huntington’s disease, including different types of genetic tests.

The whole group heard from Jessica Hancock and Eileen Krueger, current and past MN HDSA Chapter social workers, about how to access community resources.

The day ended with an opportunity for attendees to meet with other attendees of similar needs and life situations—caregivers, symptomatic individuals, at-risk but not yet symptomatic, and “tested positive” groups were available.

It was an excellent day for all who attended. The planning committee hopes next year to have even more attendees, especially people who are new to the HD community! Next year’s conference will focus on “hope”, and it will probably be held on the first Saturday in October in the Twin Cities. So—save the date, and expect to hear more details in 2009!

High school students study Huntington’s disease

I had the great pleasure of attending the International Science and Engineering Fair in Atlanta, GA in May 2008. This is the grandfather of science fairs, where you go if you win your local high school science fair and your state science fair. There were 1500 students at the fair from 50 states and many foreign countries presenting their research on everything from nanotechnology to global warming to . . . Huntington’s disease! Yes, Huntington’s disease!

There were two presentations on the effects of epigallocatechin-gallate in laboratory models of HD. (In case you have difficulty pronouncing that word, you can call it EGCG. Or you could call it “green tea” as this is what researchers believe is the "active ingredient” in green tea.

In the first project, a team of two students from Georgia administered EGCG and a number of other antioxidant compounds to cultures of nematodes (roundworms) that had been genetically engineered to carry an abnormal HD gene. These worms have been shown by other researchers to have abnormal neurological function. (How do you measure neurological function in a roundworm, you ask? You bop it on the nose. Normal roundworms recoil vigorously, and sick ones do not recoil as well. And the dead ones don’t move at all, I was told …) The worms bathed in fluid that contained EGCG had higher scores on the neurological test than the worms that were given the other compounds. The young researchers hope to extend their work this summer by trying different doses of EGCG, or perhaps moving to other types of HD animals.

In the second project, a young man from Michigan used a novel method to measure the level of oxidative stress in cells cultured in the laboratory after being removed from an HD mouse (interestingly, he used stem cells taken from the bone of the mouse, rather than brain cells). He compared normal cells to the HD cells to HD cells bathed in EGCG, and found that the cells bathed in EGCG had a more normal reading on the test for oxidative stress. He concluded that EGCG protected the cells against the oxidative stress that is felt to cause cell damage and death in HD.

The scientist in me cautions that both research groups were a little generous in their interpretation of their results, but I am happy to report all three students felt that they were well on their way to finding a cure for HD! Let us all have a green tea toast to youth, creativity, dedication, and energy! Way to go, kids!

Martha A. Nance MD

 

Special Note: We would like to acknowledge and thank the HCMC Service League for providing grant funds to help maintain these web pages.