Friday 16, Saturday 17 and Monday 19 October 2020 

We are very excited to announce our Annual Conference will go ahead virtually for the first time! As always, we have a variety of breakouts - details below in the timetable. Bookings for the breakouts will be available nearer the time. 

Have a read of the timetables and see what's on offer, then book your ticket at the bottom of the page (or click here to go straight to the tickets). Bookings close on Friday 2 October. Your attendance is free. If you would like to make a voluntary contribution, we suggest £10, which you can donate here. Thank you.

During the Conference, you will have the opportunity to send in your questions throughout the two days. Our Co-Chairmen will answer as many as time allows on Saturday afternoon.

We will send instructions on how to join the conference nearer the time. Ideally, your computer will have a microphone and video camera to help you participate fully in the conference, which will be broadcast using Zoom. There will be recordings of many of the sessions for future access via our website.

Friday 16 October headlines

Timetable

12.45pm - 1.00pm Welcome and agenda / conference schedule Introduction by Paul Coia
1.00pm - 1.45pm

Drs Question & Answers:

Cerebellar ataxias

Dr Priya Shanmugarajah, Neurologist & Emma Foster, Specialist Ataxia Nurse, Sheffield Ataxia Centre; Dr Rajith de-Silva, Neurologist, Essex Centre for Neurological Sciences, Romford. Send your questions in advance to [email protected]
1.00pm - 1.45pm

Drs Question & Answers:

Friedreich's ataxia

Prof Paola Giunti, Neurologist, & Suzanne Booth, Specialist Ataxia Nurse, London Ataxia Centre. Send your questions in advance to [email protected]
1.45pm - 2.15pm

Research Update:

Cerebellar ataxias

Dr Emily Cutting, Ataxia UK Research Manager
1.45pm - 2.15pm

Research Update:

Friedreich's ataxia

Dr Julie Greenfield, Ataxia UK Head of Research
 
BREAK
     
3.10pm - 3.30pm James Moore Emmerdale Actor and Patron of Ataxia UK
3.30pm - 4:30pm Breakout sessions  Delegates can select which breakout they are most interested to participate in.
Benefits Carlos Hagi facilitates a discussion and exploration of general problems. Please send any requests for what the discussion should cover to [email protected] Please note individual cases cannot be covered in detail at this session.
Coping with Covid-19 Prof Paola Giunti, Neurologist, & Suzanne Booth, Nurse, London Ataxia Centre. Send your questions in advance to [email protected]
InControl - ataxia services  James Atkins, InControl Programme Manager, and Shana de Figueiredo Scholtz, InControl Officer, will discuss what it means to be a volunteer with the InControl Project at Ataxia UK; how you can become involved, answer your questions. and describe the next steps for this exciting project.
Ataxia UK's Constitution Join CEO Sue Millman to talk about how you can become involved in Ataxia UK's new constitutional structure.
Mindfulness (coping with lockdown) Julia Wahl has led several Mindfulness workshops at previous Annual Conferences. Log on to find out how Mindfulness still works online.
Quarantine workout John Cernosek will help and guide you with some physical exercise you can all do to maintain fitness from home.
InControl: Online Speech Therapy - an online virtual support group. Want to join? How will it work?  Dr Anja Lowit, a researcher at the University of Strathclyde, has spoken to our conferences on several occasions about research she's been doing into speech therapy for people with ataxia. Hear about our latest collaboration with Anja which is due to start shortly. 
Diagnosis Stories  Georgia Hart, an Ataxia UK Media Volunteer and Richard Brown, Co-Chair Ataxia UK, host a group discussion on your diagnosis stories. Share your story with the group. 
 
BREAK
     
5.45pm - 6.45pm DRPLA Research Update & Q&A DRPLA is a rare form of ataxia. Ataxia UK is working in partnership with CureDRPLA in the search for a cure. If you belong to the DRPLA closed Facebook group, come to the session and put a face and voice to the people in the group, while you hear about the latest research and have an opportunity to ask clinical questions. Please submit your questions in advance to [email protected]
BREAK
     
7.00pm - 8.00pm Bingo

Dust off those witch hats, fangs and bloody Marys! While we can’t all meet face to face this year, we still want to offer some fun from home.

Please purchase your ticket at the bottom of this page. We will email you a Bingo Card closer to the day. You can print the card or have it saved on your device. When we announce the numbers, simply mark it off on your card. We will have prizes for the first players to get two lines and a full house. We also offer a special prize for the person who has the best Halloween fancy dress. Any queries then please contact us on [email protected], and we look forward to seeing you at the Halloween Bingo Party!


Saturday 17 October headlines

 

 Timetable

10.00am - 10.10am

Welcome from Paul Coia 
10.10am - 10.20am Table Time When you come to an Ataxia UK Conference you get the opportunity to meet people you're sitting near, during the conference or over lunch. This conference is no different, this first session of Table Time is to introduce yourself to a small group of other Conference participants whom you will continue to meet during the day. 
10.20am - 10.35am Ataxia UK Update How has the charity been navigating the Covid-19 world?
10.35am - 10.45am It Works for Me  How members of our community find ways to make living with ataxia work for them.
10.45am - 11.05am Financial Inclusion/Scottish Huntington's Nick Hopkins summarises the results of his recent research on the financial circumstances of people affected by ataxia and Jo Baldock will talk about the Financial Inclusion Project run by Scottish Huntington's Association which next year will partner with Ataxia UK to deliver similar services to people affected by ataxia in Scotland, which we hope to eventually offer across the UK. 
11.05am - 11.25am Coffee Break/Table Time  What do you think of the Conference so far? Have you been to an Ataxia UK conference before? 
11.25am - 11.40am Wellbeing Survey  The recently launched InControl volunteering project has an aim of increasing wellbeing and reducing isolation among people affected by ataxia and we have recently completed some research into the wellbeing of the ataxia community. Genetic Alliance, who helped us with the research, will explain its conclusions, and James Atkins, InControl Programme Manager will talk about how we aim to meet these needs.
11.40am - 11.50am It Works for Me  How members of our community find ways to make living with ataxia work for them.
11.50am - 12.00pm Table Time
12.00pm - 12.15pm Why does Black Lives Matter to people with ataxia? Ossie Stuart
   
12.15pm Break for lunch
   
2.15pm - 2.20pm Welcome back from Paul Coia
2.20pm - 2.30pm It Works for Me  How members of our community find ways to make living with ataxia work for them.
2.30pm - 3.30pm Breakouts Delegates can choose which breakout they are most interested to participate in. 
Benefits Carlos Hagi facilitates a discussion and exploration of general problems. Please send any requests for what the discussion should cover to [email protected]. Please note individual cases cannot be covered in detail at this session
Coping with Covid-19 Prof Paola Giunti, Neurologist, and Suzanne Booth, Nurse, London Ataxia Centre. Send your questions in advance to [email protected].
InControl - Volunteering at Ataxia UK James Atkins, InControl Programme Manager & Shana de Figueiredo Scholtz InControl Officer will talk about what it means to be a volunteer with the InControl Project at Ataxia UK how you can become involved, answer your questions. and describe the next steps for this exciting project.
Ataxia UK's Constitution Join CEO Sue Millman to talk about how you can become involved in Ataxia UK's new constitutional structure.
Mindfulness (coping with lockdown) Julia Wahl has led several Mindfulness workshops at previous Annual Conferences. Log on to find out how Mindfulness still works online.
Quarantine workout John Cernosek will help and guide you with some physical exercise you can all do to maintain fitness from home.
InControl: Online Speech Therapy - an online virtual support group. Want to join? How will it work?  Dr Anja Lowit, a researcher at the University of Strathclyde, has spoken to our conferences on several occasions about research she's been doing into speech therapy for people with ataxia. Hear about our latest collaboration with Anja which is due to start shortly. 
Diagnosis Stories  Georgia Hart, an Ataxia UK Media Volunteer and Richard Brown, Co-Chair Ataxia UK, host a group discussion on your diagnosis stories. Share your story with the group. 
3.30pm - 3.40pm Table Time
3.40pm - 3.45pm Welcome back from Paul Coia
3.45pm - 3.55pm FR and the Big Give Like most charities, Ataxia UK's fundraising has been decimated by the Covid-19 emergency, so this year's Big Give is even more important than usuall. Richard Brown, Co-pChair of Ataxia UK will explain what we've done with funds raised from previous Big Give Christmas Challenges; what we intend to do with funds raised this year; and how you can help.  
3.55pm - 4.05pm Branch & Support Group Award
4.05pm - 4.15pm Awards Every year Ataxia UK presents two individual awards, The Anne Ford Cup in memory of a young girl who had FA, and the Ernie Heath Shield in memory of the former Chairman of Ataxia UK who made such a magnificent contribution over so many years.
4.15pm - 4.25pm Questions and answers A chance for William Littleboy and and Richard Brown, the Co-Chairs of Ataxia UK, to reflect on some of your questions from the day.
4.25pm - 4.40pm Kyle Bryant  Kyle will need no introduction to many people with ataxia. A prestigious cyclist and fundraiser, with a feature film to his credit, Kyle works ceasely for the ataxia community in the USA and more widely across the world. An inspiration to many!
4.40pm - 4.50pm Reflection
4.50pm  Close
4.50pm - 5.00pm Table time An opportunity to have your own review of the conference and close off conversations with your table colleagues.
 6.00pm - 7.30pm Classic Comedy with Tony and Brad

To round off our virtual conference weekend, we will host an evening of classic comedy from USA and UK. Our longstanding volunteer Tony and our new recruit Brad will showcase comedy from both sides of the Atlantic. Brad and Tony will also add in some anecdotes and history around these comedians. This event is in similar vein to regular virtual activities we run at Ataxia UK every Friday. If you have any queries on this then please contact James Atkins on [email protected]


Monday 19 October  

Birds of a Feather – join a Breakout Group to talk to people with a similar ataxia or situation to you. 

After a day’s rest from the busy Conference schedule, we are organising a number of small “Birds of a Feather” groups. These facilitated groups allow people to engage with others who have a similar ataxia type to share life experiences and generally support each other.

Everybody in the group will agree to keep everything said in the group confidential.

If you are interested in being part of a group, please sign up a the bottom of this page to the group that best suits you.


Book your ticket below!

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Virtual Annual Conference

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Bingo! (£5 per household)

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Birds of a Feather

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