Resources and Support Information
In the links below you can find available resources for support and information for patients and carers.
Exercise Videos
With generous support via the National Brain Appeal Small Acorns Fund (www.nationalbrainappeal.org), Genny Hart (specialist physiotherapist) and Suzanne Booth (ataxia clinical nurse specialist) have developed two exercise videos for people with ataxia.
Seated pilates exercises for people with Ataxia - in this video we focus on seated Pilates exercises designed to improve balance, coordination, and strength.
Strength and conditioning exercises for people with Ataxia - this video focuses on strength and conditioning exercises to help build muscles strength, enhance stability, and improve overall physical health (moderate intensity workout).
Useful Websites:
Ataxia UK: The leading national charity in the UK for people affected by any type of ataxia. See website for links to research, information and advice, and locations of local support groups across the country.
You can find some fact sheets about ataxia here: https://www.ataxia.org/fact-sheets/
FARA: Friedrich’s Ataxia Research Alliance Ireland: Works to develop a strong connection with international research on Friedreich’s Ataxia, raise funds for research and increases public awareness about the plight and condition of people with Friedreich’s Ataxia.
Eurotaxia: A European non-profit association whose member organisations work together to give people with hereditary ataxia as normal a life as possible.
Genetic Alliance UK: A national charity of over 200 patient organisations, supporting those affected by genetic conditions. Genetic Alliance UK’s aim is to improve the lives of people affected by genetic conditions, ensuring that high quality services and information are available to all who need them.
The Neurological Alliance: The only collective voice for 80 organisations working together to make life better for millions of people in England with a neurological condition.
www.neural.org.uk
The Brain Charity: The Brain Charity offers national support for all neurological conditions. The website offers practical help and information, A-Z of conditions, a newsletter, Q&A forum, news and eventsRegional Driving Assessment Centre (RDAC): Provision of tailored driving assessments and driving tuition
QEF Mobility Services (Surrey) Offers a variety of driving assessments and advice
Living Made Easy – Impartial help, advice and information about daily living equipment, disability equipment, mobility and independent living aids for older or disabled people
Motability: Service that leases cars, scooters or powered wheelchairs to people with disabilities
Disabled Students’ Allowances (DSA): Information about financial assistance for disabled students
https://www.gov.uk/disabled-students-allowances-dsas/overview
Personal Independence Payment (PIP): Guidance on Personal Independence Payment eligibility and how to claim
Citizens Advice Bureau: Help and advice on benefits, housing and work
Access to Work: Overview of the Access to Work grants scheme which can be used for practical support at work
www.gov.uk/access-to-work/overview
Remap: Charitable organisation that designs and custom-makes equipment to help disabled people live more independent lives
Ability Net: The only charity in the UK that works with people with all disabilities and of all ages, helping them use computers and the internet to improve their lives at home, at work and in education
Special Effect: Putting fun and inclusion back into the lives of people with physical disabilities by helping them to play video games, using technology ranging from modified joypads to eye-control.
Carers Trust: Access advice on different aspects of caring, including self-care, benefits and work assessments, legal rights and accessing support. Caters for young and adult carers.
The Counselling Directory: A comprehensive database of UK counsellors and psychotherapists, with information on their training and experience, fees and contact information.
www.counselling-directory.org.uk
Disabled Go: A website that provides detailed information about access to local healthcare, education, jobs, services and places of interest.
Clinical Trials.gov: A database of privately and publicly funded clinical studies conducted around the world.
ERN – RND – European Reference Network for Rare Neurological Diseases: A network to support patients and families affected by rare neurological diseases (RND).
Medical Guidelines for the management of the ataxias
We have taken part with a group of experts in the making of the first medical guidelines for the management of the ataxias. You can find the whole document here:
A summary of these guidelines was produced for primary care services - you can find it here:
We have also published these guidelines in scientific journals - you can find the two articles here:
COVID-19 resources
Patient information leaflet for Covid vaccine and ataxia - January 2021
'Coping with Covid' with Prof Paola Giunti and Suzanne Booth – 16/17 October 2020
Q&A with Prof Paola Giunti and Suzanne Booth – 15 April 2020
Covid and Ataxia by Prof Paola Giunti and Suzanne Booth – July 2020
Covid and Ataxia by Prof Paola Giunti and Suzanne Booth – March 2020
Any clinical queries: We are keen to display information that is useful to you. If you would like to suggest a particular resource to be displayed on our resource page, please contact our clinicla team here: uclh.ataxia@nhs.net
Suggest a new resource: We are keen to display information that is useful to you. If you would like to suggest a particular resource to be displayed on our resource page, please contact us.