The American Society of Human Genetics (ASHG) is a nonprofit organization whose mission is to advance human genetics in science, health, and society through excellence in research, education, and advocacy. They hold a yearly essay contest for high schoolers, grades 9-12, promoting education and reflection upon genetic topics and awareness of DNA Day (Thursday, April 25, 2019). This date commemorates the completion of the Human Genome Project in April 2003 and the discovery of the double helix of DNA in 1953.

This year HDSA was very pleased to learn that ASHG’s featured essay contest topic centers on Huntington’s disease, posing a thought-provoking question about the family ethics around diagnosis. We hope this contest will promote awareness of HD by encouraging applicants to learn more about it and to think deeply about the issues faced by the HD community.

If you know a high schooler who might be interested in applying, please direct them to this website and spread the word! Essays are due March 8th, 2019, and winners will receive prizes of $100 – $1000. 


This Week in HD History

In 2001, we understood that the extra CAG repeats in the huntingtin gene were the cause of HD, but we didn’t know much about how the mutation impacts the biology of brain cells. That winter, a team led by Dr. Kenneth Fischbeck at the National Institutes of Health discovered that the long and unwieldy huntingtin protein can get into the control center, the nucleus, of a cell. There, it can interfere with other important processes that affect the function of the whole cell’s machinery. These findings had important implications for the HD research community as a window into how the toxic huntingtin protein wreaks havoc in the body and brain. Dr. Fischbeck continues to be a leader in the study of polyglutamine diseases and he currently serves on HDSA’s scientific advisory board.


Research Survey: Last Chance to Participate

Amanda Schatzle, a graduate student in the Genetic Counseling Program at Arcadia University, is looking for participants for her study on Huntington’s disease. The study is open for its final week. It is about identifying coping strategies used by individuals who are symptomatic or pre-symptomatic for Huntington’s Disease, and studying the communication of information about HD risk between those individuals and their siblings and children. The survey is anonymous and takes about 20-30 minutes.  

To be eligible to participate, you must be over the age of 18, have received positive genetic testing for Huntington’s Disease and/or been diagnosed with Huntington’s Disease by a neurologist, and have at least one biological sibling or child.  To participate visit our website or the study link.