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A list of frequently asked questions for fundraising
They are several ways which you can send us the money you raised. You can send a cheque to us and you can make a bank transfer or donate via the website. Please don’t send cash to us, if you choose to please hand this in directly into our head office.
You can go via our website and click on the donate tab to choose which project you would like to donate to.
Ataxia UK is entirely funded by the money we raise. Some of it comes from trusts and grants, but most of it comes from the generosity of people like you, who make donations, raise money, and leave us gifts in their wills. For information on any aspect of fundraising or tips and support contact the Fundraising team on 020 7582 1444 or [email protected]
Yes, we provide a range of exciting merchandise that can be used to fundraise and increase awareness of Ataxia UK.
If you are a UK tax payer you can increase the value of your gift to Ataxia UK, at no extra cost. By signing a Gift Aid Declaration, with your permission, the Inland revenue allows us to claim an extra 25p for every pond you donate.
We’re thrilled you want to fundraise for us. They are so many ways you can get involved- why not take a look at our events page for some inspiration.
Ataxia with oculomotor apraxia (AOA) comes in two forms, AOA1 or AOA2. They make two of the rarest types of ataxia.
Dentatorubral pallidoluysian atrophy (DRPLA) is a type of inherited progressive late-onset cerebellar ataxia. It is characterised by a defect in a gene that causes damage to a certain part of the brain, the cerebellum.
Strokes, gluten intolereance, alcohol, vitamin-E deficiency and trauma to the head can all cause ataxia. Some of these types can be reversed, depending on the cause; a vitamin-E deficiency can be reduced by attention given to diet, for example, that will reduce ataxic symptoms and in some cases, eliminate them all together. A patient must consult their GP or neurologist before attempting to make any changes to their diet.
Idiopathic ataxia is the name we give a type of ataxia for which the cause is not yet known. Almost 50% of people with the condition have idiopathic ataxia, showing just how much more work there is to do.
Gluten ataxia is caused by a sensitivity to the protein gluten found in wheat products. It is one of the most common forms of sporadic idiopathic ataxia (where ataxia is found in people with no family history of ataxia and no known cause). You can find more information on Gluten ataxia research here.
Our specialist ataxia neurologist, Professor M Hadjivassiliou, is a leading expert in gluten ataxia. He runs the Specialist Ataxia Centre in Sheffield, and is leading research into the condition. If you have a diagnosis of gluten ataxia, please ask for a referral from your GP to the centre for specialist care. You can read how to do that here.
There is also a useful app that helps to monitor the gluten content in well-known products, assisting with your shopping and taking control over your condition.
Episodic ataxia is characterised as bouts or attacks of ataxia symptoms. The episodic ataxias are a relatively rare group of conditions which, as their name suggests, tend to affect people in bouts or attacks of unsteadiness. There are several types, but type 2 are the most well understood, and they are called episodic ataxia type 1 and 2. Both of these occur in families and are inherited in what is known as an autosomal dominant manner. This means that an affected individual has a 50% chance of passing the gene on to their children.
You can read more about the episodic ataxias here.
The Spinocerebellar ataxias (also called SCA's) are caused by mutations in different genes. For example, spinocerebellar ataxia 1 is linked to a default in the gene SCA1.
Through research, more than 100 types of SCA's have been discovered since 1965. For more information on the different types of Spinocerebellar ataxias, see below:
Spinocerebellar ataxia 1 (SCA1)
Spinocerebellar ataxia 2 (SCA2)
Spinocerebellar ataxia 3 (SCA3)
Spinocerebellar ataxia 6 (SCA6)You can also view an illustrated leaflet on SCA6 kindly provided by Health Press Limited.
Spinocerebellar ataxia 7 (SCA7)
Spinocerebellar ataxia 11 (SCA11)
Friedreich's ataxia is the most common form of hereditary ataxia, and is caused by an inherited mutation in the frataxin (FXN) gene. See our information booklet for more information:
As well as becoming a Friend of Ataxia UK, we encourage anyone with a diagnosis of Friedreich's ataxia to join the FA Global Patient Registry.
Andrew Parkinson E: [email protected]T: 07771333089Our meetings take place at 11am at The Deal Centre for the Retired, 3 Park Street, Deal, Kent. Get in touch with Andrew to come along.
Jean Gillard E: [email protected] Our meetings take place at The Roller Mill, Mill Lane, Uckfield TN22 5AA - please contact Jean for more information.
Vanessa Bartlett E: [email protected] T: 07701007825
Yvette Loach E: [email protected] T: 07738 366 433
Dawn Wooldridge E: [email protected] T: 01268 545584 or 07539061075
Derek Wood E: [email protected] T: 07776 188 877This August we are eight years old. From an original 10 members, we now have 35 on our mailing list while we normally have an attendance of 14 at our meetings on the second Thursday of each second month. Several of the those who don’t attend actually cannot do so but like to be kept abreast of our news and activities.
We enjoy getting together with non-judgemental friends who don’t need any explanation or apology for our ataxia. We share ideas and advice from our own experiences and we are always delighted to welcome anybody affected by ataxia to join us.
Stewart Smith E: [email protected]T: 07759 539 987Our 2020 meeting dates are: 22nd September, 20th October, 17th November and the 15th December.
Tim Flanders E: [email protected] T: 07792 718178See the latest going on here
Jennifer Davies E: [email protected] We welcome new members, please contact Jennifer for more information.
Barry Munday E: [email protected]T: 01279 843 687See our website here
Meetings take place in the Beefeater at the Premier Inn, Marsh Lane, Ware, SG12 9QB. Please contact Barry for dates and times of meetings.
We are a friendly group and just have a laugh and joke, really. There is no fee or agenda, just come along and feel at home and have a chat! All kinds of people with ataxia are most welcome.
Gina Lawrence E: [email protected]T: 07786 226 404Please join us for our first virtual meeting on 17 September. Contact Gina for more information.
David StubleyT: 01205 722 771 E: [email protected]Read our newsletter hereYou are welcome to come and join us for a social get together where we help one another to overcome everyday difficulties living with ataxia. Our meetings are at the Stanground Community Centre, Whittlesey Road, Stanground, Peterborough, PE2 8QS. They are approximately every two months. All are welcome. Please contact Dave for dates and timings.
Patsy Riggs E: [email protected] T: 07801 544 974Read our latest newsletter hereWhen the lockdown is lifted, I will be sitting in the Holiday Inn from 11am to 1pm on the last Saturday of the month from February to November – no need to advise in advance if you will be attending the meeting but always pleased to hear from you.
This informal arrangement seems to work well – no membership fee. The Holiday Inn provides tea/coffee and biscuits at concessionary price, which you need to pay to me before leaving. You can also buy drinks from the bar.
In the meantime, I will host a zoom meeting at the same date time. You can get a link to the meeting from me or Head Office.
Ami TrickerClick here to see the groupA small, quick-to-respond online support group. Fancy a chat? Need to vent? Or just want to share your experience? Then we will be there for you every step of the way.