Occupational therapists at CUNY York College are conducting a 5-minute survey of both patients and caregivers that seeks to understand the interests and quality of life of people living with Huntington’s disease. Research has shown that occupational therapy and modified physical activities like tai chi, dance, gardening, and exercise programs can be helpful for people with HD. These can help in reducing negative physical and emotional symptoms associated with HD such as minimizing anxiety and risk of falls. This survey is open to individuals with HD as well as their caregivers. To proceed, please click on the following links. First, complete the consent form giving your approval to participate. Next, click on this link for the survey.
Participate in a Research Study on Mitochondria
Every cell in the body needs a ready and reliable energy source to keep running. This is made possible by mitochondria, organelles that generate chemical energy. In Huntington’s Disease, mitochondria don’t perform their job as well as they used to. A research team in Ohio is exploring this by examining blood and spinal fluid over time, to see if slight changes in chemical content could be used for diagnosis or to determine the severity of HD. This research team, led by Dr. Steven Gunzler, is seeking volunteers with HD for their clinical study. It involves 3-4 visits to the Neurological Institute at University Hospitals (South Euclid, Ohio) over 18-19 months, for physical examinations and blood tests. Some volunteers will also have lumbar puncture. To participate, you must be aged 20-80 years, have no other progressive neurological condition, and have tested positive for the HD gene. Contact study coordinator Dave Korosec at 216-844-1800.
Huntington’s Disease Essay Contest Winners
The American Society of Human Genetics sponsors a yearly essay contest for high school students about genetics and genetic testing. The 2019 question focused on Huntington’s disease, asking students to explore the ethics around disclosing a diagnosis to one’s children. You can read the winning entries here. Most exciting for us is that hundreds of kids and teachers around the world, from 25 countries and 45 U.S. states, learned about HD while doing research for their essays.
