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 patient advocacy groups.
Panel discussion: Living with ataxia – experience and perspective:
“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” Carol McCudden, panel participant, Ataxia UK Trustee.
Future of ataxia clinical trials:
This talk highlighted the need for academic researchers, industry, non-profits and governments to work together, as well as the importance of involving people affected by ataxia right from the beginning stages of clinical trial design. Talk by Dr Nina Schor, National Institute of Neurological Disorders & Stroke / National Institutes of Health.
Science dissemination to lay audiences:
Celeste Suart from McMaster University ran a workshop explaining the most effective ways scientists can explain research to the ataxia community.
Both academic researchers and pharmaceutical companies share their results on potential therapies. These included gene therapy, brain stimulation and home-based speech treatment.
Omaveloxolone research talk:
Dr Lynch presented data which compared data from the Omav trial to a natural history study of Friedreich’s ataxia. This showed that treatment with Omav slowed the progression of this ataxia. Natural history studies look at the progression of a condition over time. Dr David Lynch, University of Pennsylvania and Children’s Hospital of Philadelphia.
ICAR was a great success!
“This has been the largest ever meeting of ataxia researchers, with around 450 people attending. Ataxia UK has been proud to organise this conference alongside our colleages at FARA and NAF. Dr Julie Greenfield, Head of Research at Ataxia UK (centre).