Today 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.
HDSA Disability Advocacy Survey
HDSA is doing research to better understand the needs of the community, specifically how long it takes families to get approved for Social Security disability, which includes SSI and SSDI. Too many people living with HD are denied. HDSA is working to address this with the Social Security Administration and we need your help! Please fill out this survey to share your experience if you or a loved one has filed for SSDI.
Next Week: HDF Webinar on Brain Imaging in HD
On April 18th from 12-1PM ET, the Hereditary Disease Foundation (HDF) hosts the next installment of its Research Spotlight Webinar series featuring HDF Fellow and 2019 HDSA Human Biology Project fellow, Dr. Osama Al Dalahmah, and Dr. Shawn M. Davidson. The pair will discuss the importance of mapping the brain to understand where molecular changes occur over the progression of HD, followed by Q&A. To register for next week’s webinar, click here.