Dystonia? Is that one of those new Baltic states? Sadly this is a common question, despite the fact that dystonia as a painful and incurable neurological muscle movement disorder has been around forever.

There are at least 40,000 people with dystonia in the UK - that's one person in every 1500 of our population.

The Dystonia Society is 25 years old this year and we have come a long way in that time, from a small group of like-minded individuals to a professional organisation, determined to make life better for suffers and carers.

Whether it's funding research or giving advice on our helpline, the Society has gained a reputation as a forceful voice. But the voice could be stronger.

Our national awareness week takes place from May 4 to 11. If anyone reading my letter would like more support or information about this distressing condition, then please contact our helpline on 0845 458 6322 or visit www.dystonia.org.uk.

What we hope in future is not so much put dystonia on the map as get it off the map! When people stop reaching for an atlas at the mention of dystonia, I know we'll have succeeded.

FIONA ROSS, chairman of trustees, The Dystonia Society.