This year saw the International Congress for Ataxia Research (ICAR) held in Dallas, Texas, from 1st – 4th November 2022.
The outcome of the research presentations will be reported by the research team from Ataxia UK, but I just wanted to share some reflections, from a personal perspective, as someone living with Ataxia.
I was fortunate enough to be asked to speak on the panel, of people living with ataxia, to the research audience. About 15% of the audience was made up of clinicians who have hands-on experience of patients passing through their clinics but the rest of the 450+ audience were scientists and researchers – the closest they may have gotten to ataxia was a mouse model or stem cells!
The panel consisted of 3 people living with ataxia and one mother of two, whose children had ataxia – one of her children was also on the panel. Candid questions were asked about the diagnostic journeys we had, things that had been useful along the way and our questions and hopes from the research society. The panel was hosted on the first day of the congress, which helped set the tone for it, reminding everyone of why they do the work they do! This was such a refreshing change as many conferences place the lived experience and voice at the end, as a token gesture when most people have started to leave.
The vibe was enthusiastic and open with people willing to share their work and make connections to progress research on the ataxias. Having the panel opening the congress meant that researchers knew the panel members and shared their thoughts and feelings about the work they do throughout the week. Many said that hearing the panel speak added meaning to the work they do – they could visualise a reason.
It was hard work but worthwhile and the message I hope we left them with, on your behalf, was ‘pass the baton on’. Their fellowships or doctorates may finish but the work needs to continue and our community will be waiting, adding our voices to support everything they do – sorry, I ate the chocolate!
Carol McCudden – Ataxia UK Ambassador & Trustee