By Erin Brown
BURLINGTON, Vt. (WCAX) - This Saturday, Vermonters will walk to raise awareness about Huntington’s disease, a rare progressive brain disorder caused by a single defective gene that runs in families.
Dr. Jim Boyd, a neurologist at the UVM Medical Center, says if your parent has the gene, you have a 50% chance of inheriting it. He says the average person with the gene starts developing symptoms of disordered movement, changes in personality and depression between the ages of 30 and 50. He says in very rare cases, symptoms can start at early as childhood.
Boyd says from the time someone starts noticing symptoms, it usually takes about 15 to 20 years before they lose their ability to walk, balance, and swallow.
Boyd says they do predictive genetic testing to determine whether someone has the gene, but there is currently no cure.
“As we think about the opportunities for finding a cure, as we speak of them, this one has great opportunity because it has that prediction and it also has the opportunity to try to intervene with some of the newer technologies on that specific gene,” he explained.
On Saturday, the Huntington’s Disease Society of America’s Northeast Region will host the Hope Walk at 10 a.m. at Leddy Beach in Burlington. Team Hope is the organization’s largest national grassroots fundraising event, which takes place in more than 100 cities across the U.S. Since 2007, the events have raised more than $20 million for Huntington’s disease.