HDSA’s Coffee Walk is a series of video conversations between Chris Cosentino, Director of Marketing & Communications, and other members of the HDSA team, enjoying coffee on the streets of New York City. Filmed before COVID-19 confined HDSA’s NYC staff to our homes, the most recent Coffee Walk follows Chris and Dr. George Yohrling, Chief Scientific Officer and Chief Mission Officer, on a stroll near Penn Station, chatting about HD research. George talks about how he got involved with Huntington’s Disease research, the path from developing and studying animal models to testing drugs in humans, and how HD research influences other genetic and brain disease areas. Noting that dozens of new companies have entered the HD research space, George also explains how HDSA has expanded its programs and roles to meet the increased need for patient and caregiver input into the design of research trials.
If you didn’t catch the first coffee walk, a conversation between Chris and Louise Vetter, President and CEO of HDSA, it’s worth a watch!
HD Insights Podcast
The HD Insights Podcast, created by the Huntington Study Group (HSG), presents long-form interviews with people shaping care and research in the HD field. The most recent episode features Dr. Adam Vogel, Professor of Speech Neuroscience at the University of Melbourne in Australia. From HSG: Dr. Vogel’s team “works on improving how we recognize, describe and treat communication and swallowing deficits in people with progressive neurological disorders, including Huntington disease.” He speaks about the importance of communication, speech, and swallowing in quality of life for people with degenerative diseases, and how changes in speech can be used to predict HD symptom onset. “Being able to communicate is such an important aspect of someone,” says Dr. Vogel, “so ensuring that we can maintain that capacity as long as possible is a real goal in our group.”
This Week 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.