Over 10,000 people in the UK have been diagnosed with a form of ataxia. Whilst the medical profession can provide diagnoses and help with managing the symptoms of spinocerebellar ataxia (SCA), Ataxia UK provides an additional lifeline to sufferers as well as their friends, family and the professionals who care for them.
The following is a list of just some of the vital services provided by Ataxia UK.
Research and Fundraising
Over the past few years, they have spent over £3 million on research into finding treatments as well as a cure for ataxia. Since they do not receive funding from the Government, we depend upon the fundraising efforts of our wonderful supporters.
If you are interested in helping them to raise funds, please see their website for an information pack.
One of their principle aims is to raise awareness about ataxia. They do this through media campaigns, events such as Ataxia Awareness Day, and promotional merchandise such as wristbands and t-shirts.
In addition to raising funds and awareness about SCA, they also provide a variety of practical services for those with the condition.
Ataxia UK is in the process of setting up a network of dedicated centres offering expert provision in the diagnosis and management of ataxia. There are currently four accredited ataxia centres in the UK located in London, Oxford, Sheffield and Newcastle. Referral is via your GP or neurologist.
If you require information or support, help is just a telephone call away. Their telephone helpline is available during the hours of 10.30am till 2.30pm, Monday to Thursday. If the helpline is unmanned or busy when you call, you can leave a message and someone will call you back. The number is 0845 644 0606.
Alternatively, you can email them anytime at firstname.lastname@example.org
If you or a loved one requires more specialised assistance such as securing legal rights or benefits, their friendly and experienced advisors are available to provide information and guidance on a wide range of issues.
Their Advocacy Service can be contacted via the Helpline (see above).
They can assist you in obtaining grants towards the additional living costs associated with SCA. These costs might be incurred as a result of necessary adaptations to your home to make life a little easier.
Additionally, there are grants available through their organisation for life-enriching experiences such as travel and adventure.
Branches and Support Groups
People dealing with a life-changing condition such as SCA can often feel isolated. Connecting with others in the same situation provides an opportunity to share experiences, advice and moral support. On their website, you will find links to branches and support groups throughout the UK.
You can also get connected to their online community via discussion forums, blogs and even web chats. Links to these can be found at ataxia.org.uk
Their list of free resources includes:-
- Factsheets on a wide range of SCA related issues
- A quarterly magazine which is free to Friends of Ataxia UK. The magazine comes both in print and digital format.
Information about all of these can be found at ataxia.org.uk