On Friday 20th and Saturday 21st October 2023, Ataxia UK held their first ever hybrid in-person and virtual annual conference for families affected by ataxia. The conference, which took place at the Radisson Blu Hotel at East Midlands Airport, welcomed over 100 attendees, mostly those living with ataxias and their families, with a few researchers, clinicians, advocates, and pharmaceutical company representatives.
On Friday, Ataxia UK volunteers and staff members Niel Casey, Gemma Sheen, Harriet Brown, Derek Wood, Ed Forshaw, and Shana De Figueiredo Scholtz hosted an ‘All About Ataxia’ day, sharing videos and information sessions on lived experiences and management of a range of ataxias, made in collaboration with specialists at the Sheffield Ataxia Centre.
Saturday’s jam-packed schedule included research updates on Friedreich’s ataxia and cerebellar ataxias from Ataxia UK Research Officer Mary Barron, and former Senior Research Officer Dr Ruby Wallis, respectively. Prof Paola Giunti of the London Ataxia Centre and Dr Shpresa Pula of the London Children’s Centre hosted a doctors’ Q&A session answering questions about Friedreich’s ataxia research and treatment. Prof Paola Giunti also hosted a Q&A session on research and treatment for cerebellar ataxias.
Some highlights of the day included the ‘It Works for Me’ session from West Country Branch Chair Rebecca Downing on administering IV and the effect it has on the Friedreich’s ataxia heart, and Guy’s and St. Thomas’ Hospital Genetic Counsellor Eshika Haque’s talk on starting a family for those with genetic ataxias. Anne Neuman, Rare Disease Advocacy, Marketing and Patient Engagement Lead at the US pharmaceutical company Biohaven, hosted a talk about the value of patient engagement in research and marketing of medicines.
Prof Paola Giunti, pictured below, received the brand-new Ataxia UK Excellence in Ataxia Research and Care Award for her tremendous commitment to ataxia research for over 30 years, extending to a very wide range of common and ultra-rare ataxias including FA, SCAs, ARSACS and more recently DRPLA. She has led clinical and lab-based research at the only UK site for EU-wide natural history studies on FA and SCAs, the London Ataxia Centre. Her team was involved in clinical and lab work leading to the Skyclarys® (Omaveloxolone) approval.
In 2004 Paola’s vision corresponded to that of Ataxia UK – the establishment of an Ataxia clinic to provide people with care by clinical staff who were experts in the ataxias. She brought this into reality and today it supports around 1,200 patients. Along the way she’s established a successful multidisciplinary clinic including physios, speech and language therapists and occupational therapists. You may be aware that with Dr Shpresa Pula, she has recently established a Children’s ataxia clinic.
Importantly, Paola has always been keen to get feedback and involve patients in improving service delivery and with Ataxia UK she launched a Volunteer scheme at the Ataxia Centre, where people with personal experience of ataxia support patients at the Ataxia clinic and gather their views on the quality of the service. A few years ago, she lobbied European Parliament for ataxias to be included in the European Brain Council ‘Value of Treatment’ project evaluating the role of Ataxia centres in three European countries, due for publication.
Derek Wood, Co-Ordinator of the Ataxia UK Farnham Support Group, had this to say about the event,
“The conference was first-class in terms of organisation and content, and exceeded my expectations. The acquaintances I had made online became friends.”
Farnham Support Group received the Ataxia UK Branches and Support Group Award at the conference, which Derek Wood is pictured receiving to the left.
Keep an eye out for the recordings of the conference research talks, which will be uploaded on the AtaxiaUKonline YouTube channel here.