Charity event raises over £30,000 for children with rare disease

A charity ball has raised more than £30,000 to help children with a rare genetic disease.

Wrexham businessman Vaughn Rawson, managing director of Rawson Digital, and his wife Joanne, staged the event for the eighth time to help families coping with the rare genetic condition known as Ataxia-Telangiectasia (A-T).

The children of Vaughn’s close friends have the disease and Vaughn and his wife have been on a mission to raise funds towards medical research to speed up the process of identifying a cure or developing treatments which can delay or prevent A-T.

To date, Vaughn and Joanne have now raised a staggering £260,000 for the cause.

There were 430 guests at the latest ball, which was held for the first time at Bolesworth Castle, close to the village of Tattenhall in Cheshire, and the fundraising received a major cash boost via Darren Mercer of Mercer & Associates Wealth Management, one of the main sponsors, who donated a further £5,000 on the night.

Around £12,000 was generated via a silent auction with luxury lots to bid for including a week’s stay in a luxury Barbados villa and a diamond pendant from the Boodles Roulette collection.

Vaughn, who lives in Gresford, said: “The ball is a really well established event now and takes a lot of work to put together but Joanne and I have seen first-hand how devastating this disease is for the families it affects and this has always been our big motivation. These families deserve our support.

“While everyone always enjoys the night itself, there are always moments when we stop and think about the children and their families who we are trying to help because they are facing the cruellest and most challenging of situations.

“We are so well-supported every time by the individuals and businesses which continue to pledge their money and time to the event. I can’t thank all our guests and sponsors enough for helping us to make sure it is a success each year.

“It’s the first time we have held it at Bolesworth Castle and Nina Barbour and her team were absolutely fantastic. They couldn’t have been more welcoming and ensured the whole event ran perfectly.”

Guests to the event, which was also sponsored by Jolliffes Solicitors and Caulmert engineering, environmental and planning consultants, with support from local Barclay’s Bank manager Paul Ffoulkes, were treated to an evening of entertainment including music from tribute band, Take That Reunion, and a performance from Britain’s Got Talent dance sensation act Signature.

There were also performances from North Wales band Universal Exports, talented singer Rebecca Ffoulkes and it was hosted by sports impressionist and comedian Aaron James.

The ball partly raised money for Action for A-T, a Surrey-based charity set up in 2011 by the parents of a child with the condition, which seeks to increase investment in A-T research and raise awareness of it.

The other half of the money raised went into a trust fund which has been set up to help Vaughn’s close friends and their family.

Vaughn said: “I would say it was our best ball ever and all the entertainment was excellent, particularly Signature, who really got the guests up and dancing. They were great fun.

“I must thank the three main sponsors specifically, Mercer & Associates Wealth Management, Jolliffes Solicitors and Caulmert because it is their support which really does ensure the event maintains its success.

“We also have fantastic support from local Barclay’s Bank manager Paul Ffoulkes who has supported the event over the last six years.”

Most children with A-T appear healthy during the first years of their life before developing problems with poor balance and reduced motor coordination which is when families often realise something is wrong.

A-T does not affect the mind and there are no learning or social difficulties linked to having the disease.

For more information about A-T go to www.actionforat.org