Charles Sabine, a former NBC News correspondent, will come to Charlotte this week to speak at the seventh annual symposium of the Huntington Study Group. It’s an international network of researchers who study and care for patients affected by the rare and fatal inherited brain disease, which is characterized by progressive loss of mental ability and muscle control.
Sabine, 53, who lives in England, keeps a busy schedule. He’s just been to Rio de Janeiro, San Diego and Boston, giving talks about his personal experience with Huntington’s disease. He could have used a rest, but didn’t want to miss the Charlotte meeting because of his respect for researchers, clinicians and families who have created a special community in North Carolina.
“I have found in my travels around the world that there are places where, occasionally, you can have a perfect storm of the right people and the right setup ... I’ve seen it in five or six places. London. San Diego. Vancouver. And North Carolina is one of those.”
Sabine’s father and uncle died of Huntington’s disease, the same illness that killed folksinger Woody Guthrie in 1967. Sabine’s older brother, John, is in the advanced stages of the disease. Eight years ago, Charles Sabine took the test and learned that he, too, carried the gene for Huntington’s.
“I felt as if my world had ended,” he said. One of his doctors told him, “There’s nothing you can do about the disease. Just live your life the best you can.” But eventually Sabine’s attitude changed. “There’s everything I can do about this disease,” he said. “It’s mainly a matter of finding the time to do it.”
Like leprosy, Huntington’s has been accompanied by shame and stigma. Sabine said he never met his uncle, who was diagnosed and “hidden away.”
“It’s only really in the last 20 years that that has started to change,” Sabine said. “The message I take around the world to families is that they are not alone, and that hundreds of thousands of brilliant people are devoting their lives to finding treatments and finding ways of managing HD.”
Some of those scientists will speak at the symposium, which is expected to attract 130 families and 200 researchers from 24 states and seven nations. The speakers include:
• Dr. Donald Lo, an associate professor of neurobiology at Duke University Medical Center, who in 1999 created a biotech firm to develop new ways of discovering drugs and drug targets for neurological disorders while also trying to break logjams in the pharmaceutical industry that slow research into major diseases.
• Dr. Mary Edmondson, a Duke University psychiatrist who founded North Carolina’s HD Reach, a nonprofit organization dedicated to helping patients and families affected by Huntington’s disease.
• Dr. Francis Walker, director of the Movement Disorder Clinic at Wake Forest, who has conducted more than 20 clinical trials in the state.
• Dr. Ira Shoulson of Georgetown University, founder of the Huntington Study Group and a member of the team that identified the Huntington’s disease gene in 1993.
Edmondson, whose father died of Huntington’s, said she was tested and was found negative. Other family members have not been so lucky. “I have a real sensitivity to how much people give of themselves in the process of taking care of someone who they know is just going to get sicker and sicker. I have so much respect for people who put their heart and soul into this work … We have a lot of work left to do.”
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