MSA Trust

Blackpool Tower goes orange to mark World MSA Awareness Day

For immediate release: Sunday 14 September 2014

The lights on Blackpool Tower will be turned orange on Friday 3rdOctober to raise awareness for the rare neurological disease, multiple system atrophy (MSA) and the work of the UK’s main charity supporting people with the disease, the MSA Trust.

The management at the Blackpool Tower are supporting World MSA Awareness Day on 3 October, in memory of John Herbert, who was Operations Manager at the Tower from 1988 to 1993 and who died from MSA in May 2011.

John was born on 14 September 1946 and would have been 68 today (14/9/14). One memorable occasion during his time working there was taking part in Record Breakers, setting up a new World Record in the longest Death Slide from the top of Blackpool Tower.

MSA causes brain cells to shrink resulting in problems with balance, movement and automatic functions like blood pressure and speech. Some people with MSA say the disease traps them in their own bodies. There is no known cause or cure for MSA which strikes at random, usually when people are in their late 50s. Around 3000 people in the UK have MSA. The latter stages of MSA can be extremely challenging and people often need around the clock care.

John’s wife, Nuala, was instrumental in urging the team at Blackpool Tower to turn the lights orange on 3 October – orange being the brand colour of the MSA Trust. She and her family and friends will be at the bottom of the Tower wearing orange T-shirts when the lights are turned on. She said:

“MSA is an extremely cruel and unforgiving disease. It robs a person of their life and freedom which is devastating for their family and friends to witness. It took quite a few years before John was diagnosed, so many doctors haven’t heard of MSA.

“I’m always keen to do whatever I can to raise awareness about the disease and for the MSA Trust. We received such fantastic support from the Trust and having a specialist nurse to turn to helped ease our frustration and isolation.

“I’m so grateful to the management of Blackpool Tower for helping me keep John’s memory alive. Maybe other Towers around the world will come on board for World MSA Awareness Day 2015!”

Kate Shane, General Manager at the Blackpool Tower, added;

“We are very proud that we are able to support World MSA Awareness Day, a very deserving cause made more poignant by the impact it has had on a treasured former member of the Tower team.”

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 and it is the primary funder in the UK of research to find the cause, and one day cure, to this devastating disease.

Executive Director at the Trust, Nickie Roberts, commented:

“It is very hard to raise awareness about MSA. While it is rare disease, the people who have it and their family and friends, deserve to have their voices heard. It can be extremely frustrating and lonely to be talking about the effects of an illness that so few people know about, including health professionals.

“The Trust aims to support people with MSA from diagnosis to end of life. We are for anyone affected by the disease, families, friends, carers and health professionals.

“A big thank you to Blackpool Tower for remembering John Herbert and for raising awareness about MSA and the Trust.”

―   ENDS   ―

For more information:

Communications Team at MSA Trust:
Franca Tranza: 07718 426076,

Blackpool Tower:
Kate Shane, General Manager | Blackpool Tower Attractions
+44 (0)1253 629211 | M +44 (0)7846 156493

Nuala Herbert: 07875 010376

Notes for editors:

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

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