Rare brain disease charity holds first Family & Friends day in Wales

For immediate release: Thursday 28 August 2014

Rare brain disease charity holds first Family & Friends day in Wales

The Multiple System Atrophy Trust (MSA Trust) is holding its first Family and Friends Day on Thursday 23 October in Cardiff.

The event will provide people affected by the rare neurological disease, multiple system atrophy (MSA), an opportunity to share experiences and hear from various health professionals about managing MSA and learn about the latest developments in its treatment. The day is completely free of charge.

MSA is a neurodegenerative disease that leads to premature death and causes problems with movement, balance and the automatic functions of the body such as bladder and blood pressure control. Individuals with MSA sometimes say this devastating disease can result in them becoming trapped in their own body. There is currently no known cause or cure for MSA which affects around 3000 people in the UK.

Jill Lyons, an MSA Nurse Specialist, who works for the Trust, said:

“Having a rare disease like MSA can be extremely isolating. Most people have not heard of it and that includes health professionals. The chances are a GP will only see one case of MSA in their life time.

“That’s why it is so important for people affected by the disease to be able to come together. This is the first time the Trust is doing this as we are committed to finding ways to ease the isolation of people with MSA, their families, friends and carers.”

The MSA Trust is the UK’s main charity that supports people with MSA and their families and carers. It provides specialist nurses, an email and telephone support service, a network of support groups and it is the primary funder in the UK of research to find the cause, and one day cure, to this devastating disease.

Anyone wishing to attend the day can book online or contact office@msatrust.org.uk or 020 7940 4666.

―   ENDS   ―

Notes for editors:

To find out more about the day and book a place please click here:

https://www.msatrust.org.uk/living-with-msa/how-the-trust-can-help-you/family-friends-days/

Contact:

Franca Tranza: franca.tranza@msatrust.org.uk, 07718 42607
Head of Communications

Jill Lyons: jill.lyons@msatrust.org.uk, 01934 316119
MSA Specialist Nurse

The MSA Trust is a charity funded entirely by voluntary donations. For further information on our work, read our latest MSA News magazineHERE