Welcome to Ataxia UK

We are the UK’s leading charity for people with ataxia, their families and carers.

We support people affected by ataxia and fund research into causes and potential treatments.

To join us and become a Friend of Ataxia UK, please contact us now for an application form.

Ataxia UK on Facebook

What's new

Follow the Atlantic rowers: Read Tom and Rich's blog as they battle across the Atlantic, at http://blog.mailasail.com/redarrow Why not send the boys a message to keep their spirits up?
Take the trip of a lifetime at fantastic rates: The Jubilee Sailing Trust, which arranges tall ship sailing adventures open to disabled people, has a fantastic offer open to Friends of Ataxia UK.
Get involved in Rare Disease Day - 28 February 2010: Find out how you can get involved in Rare Disease Day 2010, and if you live in Wales, Scotland, or Northern Ireland, you have the chance to attend a special reception at your national parliament. Read on for the contact details.
Get involved in UK-wide government advisory body - paid position: Equality 2025 is a UK-wide public body comprised entirely of disabled people. Its role is to advise the Westminster Government on how to achieve disability equality. They are now seeking new members by 29 Jan - more information at http://jobs.timesonline.co.uk/job/386490/new-members-of-equality-2025
Ataxian 169 (Spring) open for submissions: If you would like to send us a letter, article, story or picture, you can get them to us up until 5 February this year. We would love to hear from you. Email cmcgowan@ataxia.org.uk or post to the office.
New Doctors Q & A available: A transcript of this session at the Manchester conference is now available - click here to download it.
Atlantic rowers finally off: After delays due to bad weather at sea, our Atlantic rowers finally set off on 5 January. You can follow the progress of their boat, the 'Red Arrow, at www.atlanticrowingrace09.com
Ataxia UK fundraiser receives MBE: Congratulations to Graham Kennedy on receiving a well-deserved MBE this year. Graham has raised over £600,000 for research into Friedreich's ataxia over the years, and Ataxia UK is hugely grateful for his support.

You can join Graham in September this year on one of his infamous Big Bad Bike Rides in Pitclochry, and help him reach his target of £1 million.

Click to read more about Graham's honour.
Ataxia UK launches new medical guidelines: The new and updated Guidelines on ataxia are now available here. You may find it useful to get a copy of this for your doctor or healthcare professional - printed copies are available from the office.
Ataxia UK donations coming in: Thanks to everyone who's been responding to our 2009 appeal - donations are coming in and we are so grateful for your support. We will be acknowledging all your donations this year - if you don't hear back from us please do let us know! Thank you once again for your kind support. You can also donate online here.
Well-known artist with ataxia dies: Well-known artist Michael Kidner has died aged 92. For the last years of his life he had cerebellar ataxia. Obituaries were carried in national papers this week for Michael.
New-look Ataxian out now!: Issue 168 of the Ataxian magazine is out this week, with a new colourful look. Let us know what you think - we hope you like it.
Jerry Farr Travel Fellowship now open: The 2010 Jerry Farr Travel Fellowship is now open for applications - it’s your chance to apply for the trip of a lifetime. The winner will receive a maximum of £3,500 to cover all the pre-agreed costs of a trip, and up to £6,000 if accompanied by a carer. The rest is up to you! Judging is carried out by panel and the closing date for entries is 19 March 2010. Winners will be notified by 23 March.
Last year’s winners were Noor and Jackie, who are soon heading off on their dream trips to Japan and New Zealand. Next year it could be you! To find out more and to enter online, visit www.ataxia.org.uk or contact us at the office for an application form. A list of companies that can help with logistics is also available.

Click here to find out more
Opportunity to get involved with NICE: The Patient and Public Involvement Programme and the Centre for Health Technology Evaluation at NICE are currently looking to recruit two lay members to the Diagnostics Advisory Committee. To find out more, click here before 15 January.
Rowers set off: Ataxia UK's brave Atlantic rowers, Rich and Tom, will be setting off tomorrow (Friday 20 November) for the Canaries, to start their race on 6 December. To sponsor them, go to www.rowingtheatlantic.com. You can send the boys a free message to their satellite phone (they may not be able to answer!) by texting to +88 163 164 0234 or send a message for free from http://messaging.iridium.com/. Follow the boys from 6 December on http://www.atlanticrowingrace09.com/ - Red arrow boat 5
New Oxford centre opening: We are pleased to announce that our third Accredited Ataxia Centre will open in Oxford on 4 December, at the John Radcliffe hospital. If you would like to attend the launch (from 12.30pm) contact Claire at the office.
Volunteers needed in London: We are looking for volunteers to come into the London office on either 2nd or 3rd December, or both depending on need, to help with the annual appeal. This will involve stuffing envelopes, and nothing more exciting, sadly! Lunch and refreshments will be provided. Contact fundraising@ataxia.org.uk if you are interested.
Ataxia UK seeks Chair of Trustees: Ataxia UK is seeking to recruit a new Chairman to join the Board of Trustees in 2010 with a view to taking over in 2011. Click here for more information.
Ataxia UK conference pictures and presentations online: If you missed out on this year's conference in Manchester, catch up with the presentations here. More pictures are on our Facebook page.
Rowing the Atlantic soon underway: Ataxia UK's intrepid rowers will be leaving the UK for their Atlantic race in less than two months, so there's still time to sponsor them in their massive challenge. Click here to listen to the rowers interviewed on BBC London.

Sponsor the rowers
Watch the Ataxia East branch on Look East TV: Click here to watch the group on regional TV - up to 1 min 40. www.ataxia.org.uk/page.builder/whatisataxia.html
New Annual Review launched: The annual review will be sent to all recipients of the Ataxian with the December issue. Click here to read it online.
Ataxia in the news: Click here for a round-up of Ataxia UK on local radio - we were also featured on BBC Scotland evening TV news and BBC Look East.
Help wanted with CA project: Friend of Ataxia UK Calum Pringle is working on a design project to help people with ataxia, as his mother has CA. He would like to speak to adults with ataxia with suggestions of design improvements or products that have helped or might help in living with ataxia. Contact Calum on calumpringle@googlemail.com.
Ataxia awareness day - Friday!: 1. Set a link from your status to www.ataxia.org.uk 2. Tell someone about ataxia 3. Ask friends and family to support Ataxia UK! 4. Watch out for ataxia stories in the media - huge thanks to all the amazing people helping with press and awareness work.
Ataxia on London's fourth plinth: Friend of Ataxia UK bev Ashby will star on London's fourth plinth on Monday, 21 September between 7 and 8pm. Bev, whose sister has ataxia, will put together a sculpture representing ataxia and read out comments from people with the condition. Find out more at www.oneandother.co.uk/ and if you live in London, why not come down to support Bev along with Ataxia UK.
Do you live in or near London? Come and join us on 27 September: Join us for the London Wheely Wobbly Walk in beautiful Victoria Park, East London. Parking, T-shirts and water all available free of charge! Help us raise awareness of ataxia. To register call 020 7582 1444 or email cmcgowan@ataxia.org.uk
Equipment free to good home: Several items of equipment are offered for collection from the London area. If you want to have it delivered instead there may be some help with the costs of this too.
Are you able to offer a lift to the Manchester conference?: If you can offer a link to the conference from the South to someone with ataxia please contact Jane Henderson on 020 7627 0445 or email JHenderson@tuc.org.uk
Autumn Ataxian 167 out this week - plus doctors' Q & A: The latest issue of the Ataxian has gone in the post this week, along with the transcript of the Exeter conference doctors' Q & A.
Conference - update: As prices have fallen from when we originally booked the conference hotel, we are pleased to announce that the new rates for an extra night's stay bed and breakfast are: i£85.00 BB Single and £95.00 in a Double Standard. Friends who have already paid can obtain a refund of the difference - contact us on 020 7582 1444.
Grants still available for Ataxia UK conference: Access grants to cover the cost of attending the Ataxia UK annual conference on 3 October are still available for people who have ataxia and receive welfare benefits. To find out more call us on 020 7582 1444 or email office@ataxia.org.uk. Why not come and join us for the biggest ataxia event of the year? You can also come for the day only totally free if you have ataxia and for just £30 otherwise.
More case studies needed: Last time we asked for case studies we got a great response and managed to place quite a few. So now we need even more! The easiest stories to place are about women aged about 20-45 (because there are so many women's magazines looking for articles). You will often receive a fee for this and it's a fantastic way to tell people ataxia exists. Check out our facebook page to see how other peole told their story. Contact Claire or 020 7587 3925 or cmcgowan@ataxia.org.uk.
Ataxia in the news: Jean Gillard of the Ataxia UK's East Sussex and Kent branch appeared on BBC national news at 6 last night talking about having mitochondrial ataxia in response to today's story about new genetic techniques. Jayne Wallace of the Gloucester group appeared in the Guardian this morning.
Ataxia UK Ball now booking: With the theme of 'Razzle Dazzle', this year's ball will take place on 28 November, once again in the beautiful surroundings of the Royal Hospital Gardens, Chelsea. Tickets are available now from the office, costings £80 each.
New raffle - win a painting commissioned by you worth £500: One of our Friends is running a raffle with the chance to win a painting worth £500 by Chester artist Ian Fennelly. tickets are £10 each and are available from the office.

For some examples of his work, click here
Government Green Paper consultation: A new Green Paper was recently launched on the future of social care for adults. The Disability Alliance have commented on the proposals which has led to some confusion that the Alliance is in favour of changing arrangements for Attendance Allowance, a benefit for over-65s. To read the clarified statement click here. You can take part in the consultation and give your views on social care by clicking here.
RTA update: Ataxia UK's Rowing the Atlantic Team are well into their training and fundraising efforts now, and recently met their local MP, Susan Kramer.
Incredible Solar Flight underway: The world's first solar-powered paramotor flight is now underway, in aid of Ataxia UK. To find out more and watch video clips of the flight in action, go to www.theincrediblewebsite.org
Free book available for blue badge holders: Limited copies of the Rough Guide to Accessible Britain are now available to blue badge holders. To find out more go to http://www.accessibleguide.co.uk/
New recycling scheme launched to help Ataxia UK: We have teamed up with the Aylesbury-based company GT Recycling Solutions, who will be collecting mobile phones as well as other recyclable products in the area to raise funds for Ataxia UK.
Don't forget - last chance to comment: Friday 31 July is the last day to join in our Ataxia UK survey, either by sending in your paper copy or filling in our online survey here.We'll be feeding back on the results of the survey in the Ataxian and online.
Would you like to help shape government policy?: The Health & Safety Executive would like to set up a group to comment on how new pieces of policy will affect people with disabilities.
New-watch Ataxia UK film on YouTube: Watch our new film of our 2009 Family Day, held at Chessington World of Adventures, and hear what our attendees have to say about living with ataxia.
Ataxia UK Annual Conference, Manchester: Bookings are filling up quickly for our annual conference, taking place 3 October, 2009 in the Radisson Hotel, Manchester airport. For more information and directions click here.
Specialist Ataxia Nurse position- Sheffield: Click here to find job details.
New-watch and listen to ataxia films and audio online: Click here to watch and listen.
What do you think? We want to know - survey closing 31 July.: Ataxia UK has launched its 2009 Friends Survey with the new edition of the Ataxian magazine. Fill in your hard copy or click here to take the survey online. Anyone who takes part (and gives us their contact details) will be entered into a prize draw to win £50. If you prefer not to, you can remain anonymous. Please fill it in to help us make our services better for you.
More free equipment-updated again: A Sovereign shoprider (three-wheeled) complete with batteries and fully overhauled isoffered free to a good home, with delivery to be arranged. Contact the office for more information. (The four-wheeled scooter has now gone to a good home).
Hoist offered free (postage only to be paid): A Milford Person Hoist is offered free of charge, with just £60 postage to be paid. The hoist originally cost £1500 and has been used less than 20 times. For more information please contact the office,
and please click here to see an image of the hoist.
Ataxia UK regional conference - this weekend!: Ataxia UK's Exeter regional conference will take place this weekend, 13 June 2009, with presentations, doctors' Q & A, entertainment, and more. The Rougemont Hotel (by Thistle) is directly opposite Exeter Central station - click here for a map.
New Ataxian out now: Ataxian 166 is on its way now to Friends and is also available to download from this site here. Download inserts and directions for the 2009 Annual Conference and the Trustee Elections.
Win a Brand New Fiat 500: This year Ataxia UK is part of Everyclick's charity raffle. As of today you can enter into the national draw to win a brand new Fiat 500! Tickets cost £2 and 95% of all the proceeds go to Ataxia UK! If you fancy your chances, get in touch with us on fundraising@ataxia.org.uk. Tickets are available until 21st August 2009.
Got a medical question?: At the Exeter regional conference on 13 June 2009, we will have our traditional Doctors' Q & A session. If you have a medical question you'd like to ask, please email research@ataxia.org.uk or call the Research team at the office on 020 7582 1444.
TV opportunity: A BBC radio station is looking for young disabled people to take part in a programme about relationships. If you're interested contact vivienne.perry@unique.com or get in touch with Claire at the office on cmcgowan@ataxia.org.uk.
Case studies are still needed and there's been quite a lot of interest from the press, so please keep getting in touch, and thank you to those who have already done so.
GIG survey still open: GIG (the Genetic Interest Group) have put together a short survey for Ataxia UK Friends on the care that they receive.
Disability equipment free to good home-UPDATE: A stairlife, support chair, and indoor wheelchair are being offered free of charge, for collection from the West Sussex area. For more information contact the helpline on 0845 644 0606.
Disabled adult with social worker wanted: The Open University are seeking a disabled adult to take part in filming learning materials for one of their courses, along with their social worker. If interested please contact Lucy at Evans Woolfe Media on 020 8744 1012
BBC Panorama on stem cells: Panorama on 18 May looked at the phenomenon of overseas stem cells treatments. To view the programme on BBC iplayer, follow this link
New Incredible Website launched: Friend of Ataxia UK Damian Cardozo has launched a new website to showcase incredible feats as well as raising money for Ataxia UK and awareness of ataxia. Have a look at www.theincrediblewebsite.org
Carers Week vouchers and booklet available: To mark Carers' Week, 8 to 14 June 2009, Ataxia UK has copies of the booklet 'You Matter Too' plus discount vouchers for Superdrug, free to carers. Get in touch today if you would like to receive your free voucher and a booklet on caring. While stocks last!
Contact cmcgowan@ataxia.org.uk or call 020 7587 3925
Would you like to tell your story in the media?: Ataxia awareness day is coming again in September, and we are already gathering case studies of people affected by ataxia who would be willing to be media volunteers and tell their story. At the moment we especially need some case studies of children and young people, so if you are a parent of a child with ataxia we would love to hear from you today.
Ataxia UK National Raffle - The Winners: On Monday 11th May the winning tickets for the Ataxia UK National Raffle were drawn. The top prize was £250. A digital camera and a day's paintbailling for eight people were also up for grabs. Ticket sales have made £2,700 for Ataxia UK. We want to say a big thank you to everyone who supported the raffle, both buying and selling tickets. To see a full list of winners click on the title above.
Wheelchair dancers wanted: Fancy learning the rapidly-growing sport of wheelchair dancing? BBC 3 are seeking wheelchair users to take part in a new dance programme.
Awards open for nominations: We recently heard about two awards which might be of interest to Friends. Winning an award is a great way to raise awareness of ataxia, and of course you'll get a great prize and a night out at an awards ceremony. Why not nominate yourself or someone you know?
Major new film launched featured Friedreich's ataxia: The Cake Eaters is a major new film coming from the USA, starring Kristen Stewart (who recently featured in the Twilight film), as a young girl with Friedreich's ataxia. There are no current plans to release the film in the UK but copies are available online.
Travelling Fellowships available: The Winston Churchill Memorial Trust has 100 fellowships available, which allow UK citizens to travel abroad for projects related to their job, hobby, or interest.
Update on 2009 Conference Costs: You spotted it - there was a small mistake in the last Ataxian about costs for the conference this year. To clear things up, we have tried to answer some of your questions. There will also be an update and booking information in the next Ataxian, due in June. We're really sorry for the confusion and please get in touch if there's anything else you want to know.
Update on Mind Clinic: Following recent interest from Friends, we have produced a briefing sheet on alternative therapies offered by the Mind Clinic.
Ataxia UK Trustees attend star-studded premiere: This week three of Ataxia UK's trustees attended the star-studded launch of the new Richard Curtis film, The Boat that Rocked. Part of the proceeds from the event have been kindly donated to Ataxia UK.
Intrepid Ataxia UK rowers take on Atlantic: Brave rowers Rich and Tom are preparing to row the Atlantic in December 2009, to help raise money for Ataxia UK.
Results of Vitamin E and Coenzyme Q10 randomised controlled trial in Friedreich’s ataxia: Results of an Ataxia UK-funded research project are now available.
New Ataxia UK Facebook launched: Do you use Facebook? Why not join us online?
Do you know someone special who could win an award?: The WellChild awards are now open for nomination for 2009. Awards are made to children and young people who have shown special bravery coping with a medical condition, and also to siblings or friends who help them. The awards are open to special healthcare professionals, too.
Bloggers Wanted: NHS Direct is seeking carers to write blogs for their Carers Direct website section.
Living Statues wanted: Artist Anthony Gormley is seeking 2,400 people to stand on Leicester Square's Fourth Plinth. If you are interested it would be a great chance to raise awareness of ataxia.
New Ataxian goes out with Trustee Nominations: The new edition of the Ataxian is on its way out to Friends this week. Enclosed with the magazine is an early call to trustee nominations for 2009-10. Although we have just had a trustee election, we are moving the process earlier for next year in order to hold the AGM in October 2009.
New overseas scholarship opportunity: LEAD has announced a new chance for a disabled person to study abroad.
Carers Week National Survey: Carers are invited to take part in the 2009 Carers Week survey, which can be completed at www.carersweeksurvey.org.uk
Katie steps down as webmaster: Ataxia UK's webmaster Katie Henderson will be moving on from the role to pursue her studies in counselling.
Happy New Year - Half Price Calendars: Happy New Year to everyone from the Ataxia UK office. Now 2009 has begun the beautiful Ataxia UK calendars are now half price! They have 12 gorgeous black and white photographs by Madeleine Cardozo and are now only £3 each (or 4 for £10). All money goes straight to Ataxia UK. To order one now call the office on 0207 582 1444.
Watch Darran bench press 10 tonnes in 10 hours: Paralympian hopeful Darran shifted 10 tonnes for Ataxia UK on Awareness Day 07. He later won the 100kg body weight class at the UK Open Bench Press Competition.

See a short video explaining how ataxia can affect people.

Helpline: 0845 644 0606

Welcome to Ataxia UK

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