The International Congress for Ataxia Research was the largest ever conference about ataxia! With a total of 458 registered delegates from 19 countries. There were 170 attendees from academia, 111 from industry, 156 junior investigators, and representatives from 9...
On Monday, July 11, Andrea Compton and Silvia Prades met with Maja Jefferies. Maja's son, Ryan, is 20 years old and he has DRPLA. It was enlightening to hear Ryan's story and Maja's efforts to fight this disease. On Tuesday, Andrea and Silvia travelled to Cardiff to...
The DRPLA Natural History and Biomarkers Study has three main objectives: Researchers would like to characterize the natural history of DRPLA, that is to say, how subjects with DRPLA change over time. This study will identify genetic factors...
Junko Shiozawa is our Advisory Board Member and her daughter has DRPLA. In May, Junko went to Japan to recruit more participants for the CureDRPLA Global Patient Registry. Although DRPLA is more common in Japan, we only have 7 Japanese participants in our patient...