On February 22nd, I organised a meet up for families affected by DRPLA who are based in Wales. I travelled to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at University College London on the DRPLA Natural History and Biomarkers Study. We met with...
Interview about the DRPLA Natural History and Biomarkers Study
We interviewed Dr Hector Garcia-Moreno and Ola Volhin about the DRPLA Natural History and Biomarkers Study, watch the full interview here. This is a global study with sites in London, New York and North Carolina, all of which are currently recruiting participants. The...
Actions Needed to Improve Lives of People with Epilepsy
The World Health Organisation has published a technical brief about epilepsy with key information and recommendations for decision-makers to strengthen the services for people with epilepsy. They aim to raise the profile of epilepsy prevention, treatment and care....
Tracking upper limb function in DRPLA
To better understand upper limb function in a way that is meaningful to people with DRPLA, researchers included a novel approach to the DRPLA Natural History and Biomarkers Study. Dr Louise Corben from Murdoch Children’s Research Institute (Australia) and her team...
Poster session at ICAR
Poster sessions are a great way of showing a research project to a large number of scientists. Our Research Manager, presented a poster at the International Congress for Ataxia Research on November 1-4th, 2022. ICAR was the largest ever conference about ataxia with a...