Ataxia Together Week - Ataxia UK
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Ataxia Together Week Events 

21 – 25 September 2026 

This year, we’re doing things a little differently. We’ve taken onboard your feedback from the last Virtual Annual Conference where many attendees noted online fatigue. While we all got used to being on Zoom for longer periods of time during the pandemic, our habits have shifted and we understand how tiring it can be to stay engaged while sitting in front of a screen for a whole day. 

Therefore, we’ve decided to adapt our Virtual Annual Conference into a whole week of events – the same key sessions and contents, but spread into shorter sessions across a week, leading up to International Ataxia Awareness Day (25 September). This follows on from the success of our Wellbeing Week, which many of you have attended. 

Scroll down for further information including the full programme and how to book your tickets.

We thank our sponsors for their support of Ataxia Together Week:

 

Monday 21 September
10am-2pm

All About Ataxia - This session is now fully booked and we are operating a waiting list. Please email us to be added to the waitlist, or register for one of our other All About Ataxia sessions here.

All About Ataxia is an informative and supportive session for anyone affected by ataxia, including people recently diagnosed, family members and carers. Learn from clinicians and therapists about ataxia, its practical impact, progression and strategies for managing its effects, alongside personal experiences and advice from volunteers living with ataxia who facilitate the session. There will also be opportunities to ask questions, share experiences and connect with others in a similar situation.

Tuesday 22 September
1-2:30pm

  • It Works For Me: Hear from others living with ataxia about their tips, trick and strategies for living well with ataxia.
  • Mindfulness: This session, led by Lucy Holland, will combine breathing techniques, visualisation, meditation and gentle yoga-based exercises to promote relaxation and inner peace. Drawing on over 20 years of experience with yoga and mindfulness, Lucy provides practical techniques to help relax the body, calm the mind and manage everyday challenges and frustrations.

Wednesday 23 September
Choose the session that is relevant to your type of ataxia. If you do not have a specific diagnosis, then we recommend joining the Cerebellar ataxia sessions.

     Cerebellar Ataxia Research Updates and Doctor's Q&A - 11am-12:30pm

  • Hear the latest updates on research trials and findings, and put your questions to Dr Michael Parkinson (Consultant neurologist at the London Ataxia Centre, UCL Queen’s Square Institute of Neurology) and Camilla Notley (Ataxia UK specialist nurse).

    Friedreich's Ataxia Research Updates and Doctor's Q&A - 2-4pm

  • Hear the latest updates on research trials and findings, including a presentation from Dr Greg Aubert (VP Clinical Development) from Lexeo Therapeutics about their FA program. You can also put your questions to Prof Paola Giunti (Consultant neurologist at the London Ataxia Centre, UCL Queen’s Square Institute of Neurology) and Camilla Notley (Ataxia UK specialist nurse).

Thursday 24 September
Let's Talk About Speech 12-1:35pm

  • It Works For Me: Hear from Phil about his experience of participating in the  Ataxia UK Speech Therapy course and how it has benefited him.
  • Speech Recognition Research Project and Voice Banking: This session explores new AI technology designed to improve speech recognition for people with ataxia, with a focus on personalised tools that better understand individual speech patterns. Andy Grant from NVIDIA will discuss the research project, the development of a new speech dataset and its potential impact on communication and quality of life. The session will also introduce ElevenLabs’ voice-cloning technology and how people with ataxia can access free licences.
  • Speech Therapy workshop with Ataxia UK Speech Therapist, Mandy Ngo: This practical workshop will provide information about Ataxia UK's Speech Therapy course and explore simple strategies to help people with ataxia speak more clearly and confidently. Participants will have the opportunity to try practical speech exercises and learn how regular practice can support communication.

Gluten/Autoimmune Ataxia Research Updates and Doctor's Q&A 2:30-4pm

  • Hear the latest research updates on Gluten and Autoimmune ataxia from Prof Marios Hadjivassiliou (Consultant Neurologist at the Sheffield Ataxia Centre), followed by a Q&A where he will be joined by specialist ataxia nurse Emma Foster to answer your questions.

Friday 25 September 
11-1pm

Hosted by Ataxia UK patron Paul Coia, we'll be celebrating International Ataxia Awareness Day with:

    • Talk from Ataxia UK CEO: Sue Millman will be talking about the latest developments at Ataxia UK, as we embark on our new 5-year strategy.
    • A thank you to our brilliant fundraisers this year.
    • Ataxia UK Awards Ceremony
    • Neurophysiotherapy workshop: This practical workshop will be hosted by Victoria Conway, a specialist neurophysiotherapist, and will explain what neurophysiotherapy is and how it can benefit ataxia patients, follow by a practical session with a chance to try some easy exercises, which will be tailored to all abilities, and can be done seated and from a wheelchair.

All sessions will be hosted online on Zoom. You will be able to register for the individual sessions that you want to attend on the booking form. (include link to a Zoom guide). 

You can join from any device, however we recommend using a PC or laptop for the best experience. If you are unfamiliar with using Zoom and would like some guidance, email us at conference@ataxia.org.uk

One ticket gives you access to all of the sessions throughout the week. The ticket is per screen, so as many people from your household can join as you like. 

The Ataxia Together Week ticket is priced on a pay-what-you-feel basis from £5, £10 or £15. 

To book your ticket, click here

Do you know someone who has gone above and beyond to support the ataxia community? Now’s your chance to shine a spotlight on their kindness, dedication and impact. Every year Ataxia UK gives out 3 awards to celebrate the particular achievements or commitment to the ataxia community. These are awarded to:    

  1. A Branch or Support Group   
  1. Someone affected by ataxia (Ernie Heath Award)   
  1. Someone who has the condition (Matthew Law Award)   

If you have anyone you’d like to nominate for the awards, you can send your nominations to conference@ataxia.org.uk.  Please include the nominee’s name and a few sentences about why you’ve nominated them and their contributions to the ataxia community.  

The winners will be announced during Ataxia Together Week event on 25 September 2026. 

Will any of the sessions be recorded? 
We are aiming to record most of the sessions, and share the recordings after the event on our Youtube channel. We are currently working with the speakers to decide which sessions are suitable to be recorded and shared. We may not be able to share recordings of sessions if they contain sensitive information. Any recordings shared to our Youtube channel will not show event participants, unless with their express permission.

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