


Meeting families with DRPLA
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...
We are funding a natural history study for DRPLA!
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...

A report from Junko Shiozawa’s trip to Japan
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...

Outcomes from the 2022 CureDRPLA Research Conference
The main goal of CureDRPLA is to advance DRPLA research and work towards a treatment for this condition, and this is what the conference was about! We had a few presentations showcasing the research that has taken place since we started this journey in 2019. All...