Support
- Parkinsonism
- Migraine
- Myasthenia Gravis
- Epilepsy
- Brain Tumours
- Acoustic Neuroma
- Alzheimer's Disease
- Dystonia
- Stroke
- Hydrocephalus
- Von Hippel-Lindau Disease (vHL)
- Spina Bifida
- Head Injury
- United Kingdom Charities
Parkinsonism
Parkinsonism is a disorder of the nervous system characterized by resting tremor, rigidity and shuffling gait.
Further information and leaflets can be obtained from;
Parkinson's Disease Society
Information Department
22 Upper Woburn Place
London WC1H 0RA, UK
Telephone:+44 171 383 3513 Fax. +44 171 383 5754
Migraine
MIGRAINE is a disorder characterized by recurrent severe headache usually associated with disturbances of vision, sensation and movements often on only one side of the body.
Further information and leaflets can be obtained from;
British Migraine Association
178a High Road,
Byfleet, Surrey KT14 7ED, UK
Telephone:+44 1932 352 468 Fax. +44 1932 351 257
Myasthenia Gravis
Myasthenia is a disorder characterized by severe muscle fatigue.
Further information and leaflets can be obtained from;
Parkinson's Disease Society
Information Department
22 Upper Woburn Place
London WC1H 0RA, UK
Telephone:+44 171 383 3513 Fax. +44 171 383 5754
Epilepsy
Epilepsy is a disorder characterized by abnormal electrical discharges in the brain, causing abnormal sensation, movement or level of consciousness. Further information and leaflets can be obtained from;
Epilepsy Association of Scotland
48 Govan Road, Glasgow G5I 1JL, UK
Telephone:+44 141 427 4911
British Epilepsy Association
National Information Center
Anstey House, Leeds.
Telephone: +44 1532 439 393
National Society for Epilepsy
Chafont Centre for Epilepsy
Chalfont St Peter,
Gerrards Cross,
Bucks SL9 0RJ
Telephone: +44 1494 873 991
Leaflets on Epilepsy
- Epilepsy & Pregnancy
- Child with epilepsy-guide for teachers
- Epilepsy for young adults
- Epilepsy, first aid guidelines
- Epilepsy & Employment
- Epilepsy, adolescence to adulthood
- Epilepsy and driving
- Women and Epilepsy
Useful Addresses
- Epilepsy Association of Scotland 48 Govan Road, Glasgow G5I 1JL, UK Telephone:+44 141 427 4911
- British Epilepsy Association National Information Center Anstey House, Leeds. Telephone: +44 1532 439 393
- National Society for Epilepsy Chafont Centre for Epilepsy Chalfont St Peter, Gerrards Cross, Bucks SL9 0RJ Telephone: +44 1494 873 991
- EPILEPSY CANADA 1470 Peel Street, Suite 745 Montreal, Quebec H3A 1T1 (514)845-7866
- Epilepsy Concern International Service Group Executive Director 1282 Wynnewood Drive West Palm Beach, , FL 33417 (407) 683-0044 (Voice)
- Epilepsy Foundation of America Director, Public Info & Education 4351 Garden City Drive Landover, MD 20785 (301) 459-3700 (Voice) (800) 332-1000 (Info/Referrals)
- EPILEPSY ONTARIO P. O. BOX 58515 197 Sheppard Avenue East North York, Ontario M2N 6R7 (800)463-1119 (905)764-5099 (416)229-2291
- Hamilton & District Chapter Epilepsy (Ontario) 92 King Street East, Suite 855 Hamilton, Ontario L8N 1A8 (905)522-8487
- OTTAWA-CARLETON Chapter EPILEPSY (Ontario) 509-180 Metcalfe Street Ottawa, Ontario K2P 1P5 (613)594-9255
Brain Tumours
Brain tumours are a diverse group of tumours that occur within the cranial cavity Further information can be obtained from your local neuro-oncology teams.
Acoustic Neuroma
Acoustic Neuroma is a benign tumour of the vestibular nerve, often presents with progressive sensory neural deafness, vertigo and tinnitus.
The Acoustic Neuroma Association is a patient-organized support and information organization for those who face or have undergone acoustic neuroma removal. Founded in 1981, the Association is tax exempt. ANA offers understanding and assistance to those experiencing cranial nerve deficits. A quarterly newsletter is published and national meetings are held every other year. There is a Medical Advisory Board. The Acoustic Neuroma Association has the following purposes:
- To provide support and information to patients who have experienced acoustic neuroma or other tumors affecting the cranial nerves
- To act as an information source, including current medical advances, for physicians and health care personnel interested in the treatment of benign tumors and the alleviation of post-surgical problems experienced by patients
- To promote and support research on the cause, development, and treatment of acoustic neuroma and other benign cranial tumors
- To educate the public regarding symptoms suggestive of acoustic neuroma, thus promoting early diagnosis and successful treatment
Alzheimer's Disease
Alzheimer's Disease is a progressive neurological disorder characterized by aphasia, apraxia, agnosia and dementia and accounts for 50% of dementias.
The Alzheimer's Association is the National Voluntary Health Agency dedicated to researching the preventions, cures and treatments of Alzheimer's disease and related disorders, and providing support and assistance to afflicted patients and their families. The Association's mission is carried out by:
- Investigating the causes, preventions, treatments and cures for Alzheimer's disease and related disorders
- Educating the public and disseminating information to health care professionals
- Forming chapters to provide a nationwide family support network and other programs in the local communities
- Advocating improved public policy and promoting needed legislation
- Offering patient and family services to aid present and future patients and care givers
Dystonia
Dystonia is a neurological disorder characterized by involuntary, uncontrollable muscular contractions that force certain parts of the body into abnormal, often painful, movements or positions. Besides the debilitating effect of the disease itself, dystonia sufferers are faced with an additional challenge due to the lack of awareness both on the part of the medical professions and in the public in general.
There are several different types of dystonia, including: are: Spasmodic Torticollis affecting the neck area; Generalized Dystonia affecting all parts of the body; Writer's Cramp affecting the hand and forearm; Blepharospasm characterized by an uncontrollable movement of the eyelids; Oromandibular Dystonia affecting the muscles of the jaw, tongue and mouth. Lack of awareness in the medical profession about this condition often leads to misdiagnosis and the patient is advised to seek psychiatric help.
Some sufferers are known to go long periods of time without seeking medical assistance because they succumb to the belief that their condition is merely self-inflicted. It can be seen that public awareness, along with the search for a cure for dystonia, remains the number one challenge for those dystonia sufferers who have grouped together in organizations all across the country. Such an organization is the Dystonia Support Group
Stroke
Stroke usually means sudden onst of neurological deficit such as loss of power of the hand or loss of speech due to lack of blood supply to an area or areas of the brain. If the deficit recovers within 24 hours the condition is named a transient ischaemic attack (TIA). Other names commonly used is a Cerebro-Vascular- Accident or CVA.
Hydrocephalus
Hydrocephalus is commonly known as 'water on the brain', although this is not accurate. A watery fluid, known as cerebro-spinal fluid (or CSF, for short), is produced constantly inside each of the four spaces or ventricles inside the brain. The CSF normally flows through narrow pathways from one ventricle to the next, then out over the outside of the brain and down the spinal cord. The CSF is absorbed into the bloodstream and the amount and pressure are normally kept within a fairly narrow range. If the drainage pathways are obstructed at any point, the fluid accumulates in the ventricles inside the brain, causing them to enlarge. In babies and infants, the head will also enlarge.
Von Hippel-Lindau Disease (vHL)
vHL disease is rare autosomal dominant condition characterized by multiple tumours such as haemangioblastoma of the cerebellum & spinal cord, renal cell cancer, retinal angiomas and phaeochromocytomas.
Spina Bifida
Spina Bifida is a fault in the spinal column in which one or more vertebrae (the bones which form the backbone) fail to form properly, leaving a gap or split.There is a very mild and common form (Spina bifida Occulta) and very rarely causes disability. There is usually a slight deficiency in the formation of one of the vertebrae. It can take the form of a dimple or small hair growth on the back. However, many people are unaware that they have spina bifida occulta as they display absolutely no symptoms of the condition.
The other visible type (Spina bifida cystica) is more severe. If the sac contains only fluid, it is called meningocoele, but if it contained fluid and neural tissue, it is called myelomeningocoele.
Head Injury
In Scotland approximately 5700 people sustain moderate to severe head trauma each year of whom 800 would be severe. Approximately 200 can be expected to die. Over 5000 will be left with some form of disability for the rest of their lives. About 2 % of the population attend hospitals with some form of head trauma. The average age of a head injured person is about 30 years and expected to survive for a further 50 years and head injury is the major cause of disability in men under the age of 60 in the UK.
Further information can be obtained from H.I.T.S. (Head Injuries Trust for Scotland) at
HITS,
7 Queens Crescent,
Glasgow G4 9BW
Tel; +44 141 332 6104 or Fax; +44 141 353 2543
also from
HITS,
Dundas Resource Centre,
Oxgang Road,
GRANGEMOUTH FK3 9ET
Tel; +44 1324 471311 or Fax; +44 1324 471800
United Kingdom Charities
- Charities in England and Wales: Charity Commission - http://www.charity-commission.gov.uk/
- Charities in Scotland: Office of the Scottish Charity Regulator - http://www.oscr.org.uk/
- Charities in Northern Ireland: Charity Commission for Northern Ireland - http://www.dsdni.gov.uk/ccni.htm
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If you know any link or support group which you think should be linked here, please let me know.

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