The field of HD research is constantly evolving as scientists inch closer to treatments and cures for people affected by HD. But until that day comes, best care practices for individuals with HD remain an important conversation to support families affected by the disease. In his HDSA-funded research study, Dr. Leonard Sokol set out to learn more about the supportive-care needs of people affected by HD. To learn more about Dr. Sokol’s research and his commitment to the HD community, read his researcher spotlight article, here.
Move to improve: Telehealth Exercise to Music for HD
A group of researchers at the HDSA Center of Excellence at The Ohio State University are examining how telehealth can be used to implement exercise routines for people with HD. The study will determine whether telehealth exercise programs have positive effects on tasks related to movement, memory, thinking, and balance for people with HD. If you or someone you know has a diagnosis of HD and is 21 years or older, they may be able to participate. Check out the study flyer or visit HDTrialfinder.org to learn more.
This Month in HD History
On April 13th, 1872, George Huntington published a paper called “On Chorea,” describing the disease that would come to be known by his name. He was a medical student studying at Columbia University, and had grown up on Long Island, New York, where both his father and grandfather were physicians. In this relatively isolated community, the three doctors saw families with symptoms of a disease that affected their minds and their movements. Huntington was not actually the first to describe the symptoms, but he was the first to do it concisely, publicly, and with extraordinary accuracy for a person of his time. He understood that the disorder ran in families, causing changes in mood and personality as well as uncontrollable movements, known even then as “chorea” after the ancient Greek word for dance. He also correctly reported that if the disease was not passed down from parent to child, then the chain was broken, a remarkable deduction in a time before the study of genetics. Huntington publicized what was then thought to be a very rare and unknown disease, and his paper is still cited today by scientists writing about the origins of HD research.