Summary
- International HD Awareness Day
- This Month in HD History
- Next Week at HDA: A Conversation with HDBuzz
International HD Awareness Day
The global Huntington’s Disease community celebrates May 15 as the International Huntington’s Disease Awareness Day, a special day for the global Huntington’s Disease (HD) community to unite to raise awareness for Huntington’s Disease. You can help HDSA turn up the volume on HD awareness during the entire month of May – check out our Let’s Talk About HD campaign!
This Month in HD History
In May of 1997, a few years after the CAG repeat mutation that causes Huntington’s disease had been discovered, scientists and doctors made another important observation about the HD gene. The team examined 89 brains generously donated by people with HD and found that the more CAG repeats a person carried, the earlier the onset of their HD symptoms and brain pathology. This general relationship between mutation length and age of onset has been confirmed many times in the past 20 years. However, there’s a huge amount of variability – often two people with the exact same CAG repeat length show symptoms at different ages. The question of why has been a great mystery within the HD field, and researchers (including HDSA Fellows) now have the tools to explore genetic and environmental clues to uncover other modifiers of HD onset and progression. The ultimate goal is to harness this knowledge to develop therapies that delay onset of the disease.
The original study about CAG repeat length relied on many individual brain donations, and many current HD research studies on the human brain depend on extraordinary individuals and families who make the decision to donate. If you’re interested in learning more about brain donation, click here or email HBTRC@mclean.harvard.edu.
Next Week at HDA: A Conversation with HDBuzz
Next week, the Huntington’s Disease Association will host the editors of HDBuzz for a webinar covering the HD research landscape with ample time for audience Q&A. To learn more and register to join the May 22nd webinar, click here.
