Every spring, for more than 20 years, Nancy Wexler led an international team of researchers and clinicians on a month-long visit to the area to examine, study and care for HD families in this region. They started tracing the path of the disease through 10 generations in a family tree that included more than 18,000 people, and during these visits, the Venezuelan HD families generously and consistently donated blood and other biological samples.
On March 23rd, 1993, the US-Venezuela Collaborative Research Network scientists announced the discovery of the gene causing Huntington’s Disease (HD). The announcement, after decades of research, made evident the partnership of ‘families living with HD’ and the ‘scientists working on their behalf’. This milestone and partnership were celebrated in homes, laboratories, and clinics.
Around the world, many HD families contributed their DNA samples to the research teams, and this enabled to the discovery of the gene. Hundreds of families from Venezuela played a significant role in this achievement.