If you or your organisation share the vision of the Alliance where people living with neurological conditions will have access to the best care possible, have control over their lives and be able to live free from ignorance and injustice, you may like to join us. Becoming a member of the Alliance means we can collaborate better, have a stronger voice and ensure that we raise awareness, influence policy and improve care for people with neurological conditions.
Twenty seven organisations are currently members of the Wales Neurological Alliance. They are listed below. Click on an organisation to find out about their work:
Alzheimer's Society is a membership organisation which works to improve the quality of life of people affected by people in England, Wales and Northern Ireland. The Society provides information and over 2,000 local support services to people affected by dementia in their communities.
The Alzheimer's Society
Wales National Office
16 Columbus Walk
Atlantic Wharf
Cardiff
CF10 4BY
Association of Spina Bifida and Hydrocephalus (ASBAH) Cymru
ASBAH Cymru (Association for Spina Bifida and Hydrocephalus) is the only organisation in Wales dedicated to providing support to people who have spina bifida and/or hydrocephalus (SB/H).
We work with individuals, their siblings, families and carers to provide advocacy, advice, support and social opportunities to promote and encourage individual choice, control and quality of life.
For further information, contact Kate Thomas, Director, ASBAH Cymru on 01656 864102 or email katet@asbah.org
Ataxia UK works in two main ways: we fund research into finding treatments and a cure for ataxia, and we support people through our range of services.
'Ataxia' means ‘lack of order’. People with ataxia have problems with movement, balance, and speech. Over 10,000 people in the UK have a form of ataxia. There is currently no cure but we are working to find one every day.
The Brain and Spine Helpline provides support and information to those affected by the many conditions associated with the brain and spine. Our helpline is staffed by Neuroscience nurses who are able to help with a wide range of conditions and queries. It covers all neurological conditions, from the fairly common to the very rare, and can offer information and support on any medical or related social and emotional issues of concern. The service answers queries by telephone, letter or email as well as providing an opportunity for people to share their experiences of having a neurological condition on the discussion forum.
Brain and Spine Foundation
3.36 Canterbury Court
Kennington Park
1-3 Brixton Road
London
SW9 6DE
Cerebra works to help improve the lives of children with brain related conditions through researching, educating and directly supporting children and their carers. It covers all of the UK through its headquarters in Carmarthen, Wales, and a network of regional offices around the country.
Registered Charity no. 1089812.
Company Limited by Guarantee no. 4336380.
Cerebra
2nd Floor Offices
The Lyric Building
King Street
Carmarthen
SA31 1BD
The national support group for people with Charcot-Marie-Tooth.
Charcot-Marie-Tooth Disease is also known as Hereditary Motor and Sensory Neuropathy (HMSN), or peroneal muscular atrophy. (All of these names describe the same condition).
CMT United Kingdom has two main aims: to support and inform those with CMT and to tell the medical fraternity and the public about the condition. We do this nationally and through our network of local support groups.
Additionally, we aim to promote research into the means by which CMT may be prevented and treated and circulate the results of such research for the benefit of the public.
CMT United Kingdom
98 Broadway
Southbourne
Bournemouth
BH6 4EH
The CSP is the professional, educational and trade union body for its 49,000 members in the UK, physiotherapy being the third largest health profession after doctors and nurses with 98-99% of all registered physiotherapists members of the CSP. It represents around 1,500 physiotherapists, technical instructors, assistants and students in Wales. CSP members work primarily in the NHS but also in the independent sector, education, research, the voluntary sector, industry and occupational health.
The British Association and College of Occupational Therapists is the professional body and Trade Union for occupational therapy staff in the UK. Occupational therapists and support workers help people engage as independently as possible in the activities (occupations) which enhance their health and wellbeing
The British Association and College of Occupational Therapists
106-114 Borough High Street,
Southwark,
London,
SE1 1LB
The Dystonia Society exists to promote the welfare of people who are affected by any form of the neurological movement disorder known as dystonia. The Society aims to do this by promoting awareness of the disorder, by supporting research and by undertaking welfare initiatives. It does this on a national level and through its network of local support groups. Local contact: Alan Tamlyn Tel: 02920914600 (Cardiff)
The Dystonia Society
1st Floor, Camelford House
89 Albert Embankment
London
SE1 7TP
Different Strokes was founded by younger stroke survivors and is still largely managed and staffed by younger stroke survivors. It provides information, support, guidance and specialised exercise classes throughout the UK to enable younger stroke survivors to achieve their optimum recovery both physically and psychologically.
The Encephalitis Society provides support for adults and children affected by Encephalitis by providing advice and information and working at national levels to improve services. Encephalitis is an inflammation of the brain. The Encephalitis Society also produces evidence based information, on all aspects of the condition, raises awareness of the condition and its subsequent problems and conducts research with other researchers and their establishments.
The Encephalitis Society
7b,Saville Street, Malton, North Yorkshire YO17 7LL
Epilepsy Action is the leading representative organisation for epilepsy in the UK, with around 16,000 members. Epilepsy
Action helps over 688,000 people every year through its range of services including its advice and information service,
branch network and Sapphire Nurse Scheme. The organisation’s award-winning Website receives over 75,000 visitors a
month. Epilepsy Helpline (Freephone 0808 800 5050) is available Monday-Friday, 9.00 am¾4.30pm (4.00 pm on Fridays).
Epilepsy Action
New Anstey House
Gate Way Drive
Yeadon
Leeds
LS19 7XY
Epilepsy Wales supports people with epilepsy, their families and carers. Epilepsy Wales raises the awareness and understanding of epilepsy and campaigns for better services for people with epilepsy. This is done on a national level and through its network of fieldworkers and local support groups.
Epilepsy Wales
Bradbury House
23 Salisbury Road
Wrexham
LL13 7AS
Genetic Alliance UK is the national alliance of patient organisations with a membership of over 130 charities supporting all those affected by genetic disorders. Our aim is to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.
Supporting: We seek to raise awareness of genetic conditions and improve the quality of services and information available to patients and families.
Campaigning: We actively campaign on issues of policy and practice to influence governments, policy makers, industry and care providers such as the National Health Service.
Uniting: We provide a united voice for all those affected by genetic conditions, enabling us to work together towards a common goal of making life better for patients and families at risk.
Main office:
Genetic Alliance UK
Unit 43 Leroy House
436 Essex Rd
London N1 3QP mail@geneticalliance.org.uk
020 7704 3141
Wales office:
206b Neuadd Meirionnydd
Heath Park
Cardiff CF14 4YS williamsbg@cf.ac.uk
029 20 687 646
On a national level, the support group provides information, non-medical advice and other assistance to GBS and CIDP sufferers and their families; promoting research into the causes, prevention and treatment of the illnesses. Advancing the education of the public and of the medical professions concerning the illnesses, their causes, prevention and treatment.
Guillain-Barré Syndrome Support Group
Woodholme House
Heckington Business Park
Station Road
Heckington
Sleaford
Lincolnshire
NG34 9JH
Headway exists to promote understanding of all aspects of brain injury and to provide information, support and services to people with a brain injury, their families and carers. It does this locally through a network of local Groups and Branches throughout the UK and Channel Islands offering a wide range of services, including rehabilitation programmes, carer support, social re-integration, community outreach and respite care. Nationally Headway UK provides support to the local Groups and Branches and helps to deliver high quality services through guidance on policies, procedures, standards and training.
Headway (Wales)
Dave Maggs
Wales Development Manager
The HDA exists to support families affected by Huntington's disease. It also provides information and advice to professionals whose task it is to support these families. The Association has a central information, advice and support service, a regional care advisory service and local branches and support groups. It offers a Helpline Service during office hours, a twice yearly Newsletter, Publications and information and a Welfare Grant Fund.
HDA Head Office:
Neurosupport Centre,
Norton St,
LIVERPOOL,
L3 8LR.
Motor Neurone Disease (MND) is a fatal rapidly progressive neurodegenerative disease that can affect any adult at any time. Five people die every day in the UK from MND. The vision of the MND Association is a world free of MND. Our mission is to fund and promote research to bring about an end to MND. Until then, we will do all that we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible, and die with dignity. We will also do all that we can to support the families and carers of people with MND.
The Myasthenia Gravis Association exists to support patients with the incurable neuro-muscular condition Myasthenia Gravis, a muscle weakening disease. The Association and its associated branches work to increase public and medical awareness of the condition.
Office: Myasthenia Gravis Association The College Business Centre, Uttoxeter, New Road DERBYDE22 3WZ
Telephone: 01332-290219 Fax: 01332-293641 Free Phone Help Lines: Within UK: 0800-919922
MS Society Cymru is the Wales-wide charity dedicated to supporting people who have MS, as well as providing help for their families, friends, carers and colleagues. A significant number of the MS Society Cymru National Council and volunteers either have MS or have a personal connection with MS. The Society provides care and support through services which include a national information and helpline service, publications, welfare grants, funding research and supporting MS specialist nurses.
MS Society Cymru
Temple Court
Cathedral Road
Cardiff
CF11 9HA
Tel: 029 2078 6676
The NTF is an organisation which represents the one million people in the UK suffering from symptomatic tremor. The remit of the charity is to provide support, advice, education and raise funds for research into tremors of all types. Please visit our website at www.tremor.org.uk or join our group National Tremor Foundation on Facebook to chat and interact with our members.
Parkinson’s UK in Wales is a research and support charity, committed to finding a cure and improving life for everyone affected by Parkinson’s. We also campaign to change attitudes and demand better services. Every hour someone is told they have Parkinson’s and because we are here no one will have to face Parkinson’s alone. We bring people with Parkinson’s, their carers and families together via our network of local groups, our website and free confidential helpline. Specialist nurses, our supporters and staff provide information and training on every aspect of Parkinson’s.
Contact details:
Parkinson’s UK / Cymru
Maritime Offices
Woodland Terrace
Maes y Coed
Pontypridd
CF47 1DZ
The Stroke Association is the only UK charity solely concerned with helping everyone affected by stroke. The Associations main focus is to prevent strokes and to give support to people who have had a stroke and their families through information, and rehabilitation and support services.
The Stroke Assocation
Green Meadow Business Park
Unit 8
CaeGwyrdd
Tongwynlais
Cardiff CF12 7AB
WAMES works in Wales to improve the lives of people with ME, CFS and PVFS, their families and carers. The Association does this by campaigning for better services, raising awareness, providing support to young people with ME & CFS and developing bilingual information all those are affected by or provide services for people with ME & CFS.
The Coach House Frongôg
Aberystwyth
Ceredigion SY23 3HN
