Between November 1st – 4th 2022, Ataxia UK, the National Ataxia Foundation (NAF), and the Friedreich’s Ataxia Research Alliance (FARA) co-hosted the International Congress for Ataxia Research (ICAR). This conference was held in Dallas, Texas, USA and combined the best of the organisations’ popular scientific research meetings.
The conference was a hugely successful event. About 450 people attended from 19 different countries, including researchers, pharmaceutical companies, and patient group representatives. The conference programme included sessions on many different aspects of ataxia, including gene discovery, disease mechanisms, biomarkers, and emerging therapeutics.
The conference also included a panel discussion on living with ataxia, with Ataxia UK Trustee Carol McCudden taking part as a participant on the panel. Carol said “I think it’s useful for researchers and people involved in research to get an insight into the lives of people with ataxia. It’s also important for people with ataxia to engage with researchers to let them know what we want and need.”
Over 200 posters of research projects were presented, including some on projects undertaken or supported by Ataxia UK. These projects included the results of Ataxia UK surveys on the impact of COVID-19 on people with ataxia, and attitudes of people with ataxia towards clinical trials.
International conferences are a fantastic opportunity for ataxia researchers to present their work, connect with other researchers, and attend lectures and workshops. Collaborative events such as these are important for inspiring and progressing further ataxia research. In the late-breaking news session research was presented on the identification of a gene modification causing a common cause of ataxia that may lead to more diagnoses for people with ataxia of unknown cause (more on this to follow). Ataxia UK awarded travel awards to nine UK-based ataxia researchers to help them attend the conference and showcase their research on many different types of ataxia.
Ataxia Global Initiative
The Ataxia Global Initiative (AGI) Conference was held immediately after ICAR 2022, On November 4th – 5th. The AGI is a worldwide research platform, with the goal of facilitating development of therapies for the ataxias. It involves researchers, pharmaceutical representatives, and patient groups, including Dr Julie Greenfield, Ataxia UK’s Head of Research, on the Steering Committee. The AGI conference included presentations on a range of ataxias, focusing on clinical trial-readiness.