Psp Fact Sheet

FACT SHEET ABOUT PSP AND THE PSP ASSOCIATION

About the Disease

PSP is a comparatively rare degenerative brain disease, involving the progressive death of neurons (nerve endings) in the brain. The cause is unknown and there is, as yet, no effective treatment and no known cure. PSP affects progressively a patient’s vision, balance, mobility, speech and ability to swallow. It can also cause personality changes and behavioural problems. As it progresses, wheelchair and other mobility aids may be required, with tube feeding and 24 hour nursing care in the later stages. It mainly affects those aged over 50, but younger cases have been known.

Leading neurologists estimate that there could be up to 10,000 cases of PSP in the UK today. However, correct diagnosis, especially in the early stages of the condition, is difficult and until recently many health professionals were unaware of the disease and diagnostic criteria had not been set. Recent research indicates a prevalence of PSP in the UK similar to Motor Neurone Disease, a similarly nasty but much better known neuro-degenerative disease. PSP is the disease from which the British born actor and comedian Dudley Moore suffered.

Many PSP patients still remain undiagnosed, or misdiagnosed as having Parkinson’s or other related conditions. As these other conditions have different and better prognoses and treatments, many PSP patients suffer severe physical and psychological distress and are left feeling desperately neglected and isolated. To achieve a greater understanding of the causes of PSP, to find effective treatment and ultimately a cure, specific and focused research is urgently required.

About the Association

Brigadier Michael Koe, OBE, and his wife Sara established this registered charity in 1994 after she was diagnosed as having PSP. They were appalled to learn that so little was known about the disease. Sara Koe died in 1995 from aspirational pneumonia, a not uncommon complication of PSP.

The three main objectives of the PSP Association are to:

- Promote and sponsor research worldwide into the cause, effective treatment and eventual cure of PSP.

- Provide information and support for families afflicted by this disease across Europe.

- Engender awareness, particularly amongst relevant medical professionals, of PSP and of the Association, mainly within the UK. Achievements

The PSP Association has accomplished a remarkable amount since 1994, including:

- Funding over a million pounds worth of new research worldwide into PSP, including a project looking into the mechanism of the susceptibility gene in PSP. - Running the first ever International Medical Workshop devoted solely to PSP in 1996; and four further such workshops in 1999, 2001, 2003 & 2005. - Establishing the only Telephone Counseling Service dedicated solely to those affected by PSP. The service is run by qualified nurses with specialist training in PSP. - Establishing sixteen Local Support Groups across the UK for patients and carers and running, each year, a Symposium for Carers and Therapists. - Raising awareness of PSP and the Association across Europe.

The Association’s Patron, The Duchess of Gloucester, formally opened the new Sara Koe PSP Research Centre, based at The Institute of Neurology, University College, London, in April 2002. This is the first dedicated PSP Research Centre in the world. As well as conducting its own research into PSP, the Centre also acts as a coordinating centre, collecting and collating research worldwide into PSP.

Supporting the PSP Association

The Association organises many of its own fundraising events. These include annual participation in the London and New York Marathons, the Marathon des Sables and a number of smaller Marathons and runs, as well as Golf Days, Driving Days, a Pentathlon, Concerts and Reels Evenings. Recent events abroad have included a sponsored horse ride across the Algarve region of Portugal, and a sponsored mountain bike ride in the Atlas Mountains region of Morocco.

Many subscribers to the Association undertake their own fundraising events, particularly in connection with the PSP Association’s annual Magnolia Day. The Association also receives funds from donor trusts, pharmaceutical companies and from donations and legacies.

We increasingly need the support of others to help us toward our objectives. To find out more about supporting or subscribing to the PSP Association, please contact us at the address below.

For more information on PSP and the PSP Association, please contact:

The Progressive Supranuclear Palsy [PSP Europe] Association, The Old Rectory, Wappenham, Towcester, Northants NN12 8SQ Tel: 01327 860299/342, Fax: 01327 861007

Email: [email protected] Website: www.pspeur.org