Dystonia Champion John Invited to Visit Royal Residence

John Meredith, a resident of Cwmdare, recently received a right royal invitation to join the Queen at one of her Garden Parties in Buckingham Palace.

Cynon Valley AM Vikki Howells had nominated John for his work on behalf of people affected by dystonia, a condition which can last a lifetime and see people affected by uncontrolled and sometimes painful muscle movements.

The local AM had worked closely with John since her election in 2016 to raise awareness of the condition, and had hosted several meetings where Welsh Health Minister Vaughan Gething could speak directly to people living with the condition.

Vikki nominated John for his indefatigable campaigning for people with dystonia, and he was joined on the special day by his wife Stephanie.

Vikki Howells AM said:-

“I have enjoyed working with John to raise the profile of dystonia, and to ensure that those living with dystonia get the right support and treatment so that they can get on with their lives.

“John has dystonia, and is a strong advocate for other people who have this condition. It was a pleasure to nominate him to attend a Royal Garden Party”.

John Meredith said:-

“It was a great honour to represent the Dystonia Society at one of  the Royal Garden Parties.

“Many thanks to Vikki Howells AM for the nomination for the work we have achieved for awareness of Dystonia. My wife and I had a very enjoyable day at Buckingham Palace”.

For more information on dystonia, please visit the Dystonia Society’s website at https://www.dystonia.org.uk/

ENDS

Notes

• Dystonia is a little known neurological movement condition that affects around 1% of the population of Wales.
• Faulty signals to the brain forces the body into twisting , repetitive movement or abnormal postures and can also affect the eyesight called Bletharospasm, and the voice which is called Laryngeal Dystonia.
• Dystonia is now the 3rd most common neurological movement condition in Wales.
• Sadly, there is as yet no cure for Dystonia.
• The main treatment for Dystonia is botulinum Neuro toxin (Botox) that is administered every three months.
• John Meredith has worked with Vikki Howells AM to campaign for improved capacity issues at the University Hospital Cardiff where the treatment is provided, including through meetings with the Health Minister to push for awareness and deliver a sustainable treatment for Neuro toxin injections in South East Wales for Dystonia.