Boost for Amy and Friends with £500 gift

Boost for Amy and Friends with £500 gift

A charity that raises awareness of a debilitating premature ageing disorder which affects children from birth is celebrating after receiving a £500 donation from generous Birmingham workers.

Amy and Friends Cockayne Syndrome Support received the money from employees of employment experts Pertemps People Development Group (PPDG). The company operates a Give As You Earn (GAYE) scheme which each year donates thousands of pounds to charities and other good causes. Employees make a donation to the scheme each month.

Amy and Friends Cockayne Syndrome Support was set up in 2007 by Jayne Hughes, from Wallasey, the Wirral. She established the organisation after her daughter Amy, who is now 19, was diagnosed with Cockayne Syndrome (CS). The average life expectancy of children with the condition is 12 but many die much younger.

Jayne said: “We have campaigned tirelessly to raise awareness of the condition. The money will go towards funding a conference which will bring some of the leading experts in CS to the UK to offer their support and discuss the latest developments. It is a struggle to raise awareness of the condition but we are finally making a breakthrough and hope to have the centre of excellence open in this country in the very near future.”

The charity was nominated for a GAYE donation by Siamha Butt, PPDG employer liaison co-ordinator at its Newtown office in Birmingham. Her 18 month old niece Inaya also has CS and Siamha works every Saturday raising awareness and funds for the charity.

She said: “Jayne has done amazing work to raise awareness of Cockayne Syndrome through Amy and Friends over the last four years and works so hard for the charity.

“My little nice Inaya is a sufferer and has had to have countless operations in the first year of her life. I work one day a week voluntarily for the charity and see what a wonderful job the group does to try and raise awareness of the debilitating condition. I mentioned the charity to my work colleagues and they thought it was a fantastic cause.”

CS is a premature ageing disorder that leads to a shortened life expectancy. It is a very rare condition affecting one in 560,000 children.  CS sufferers can show signs of impaired growth and development of the nervous system, hearing loss, eye abnormalities and problems with internal organs.

Jayne works tirelessly with a group of volunteers and specialists in America to promote the charity.  They are planning to set up a centre of excellence for the treatment and awareness of CS in the UK.

The money donated by PPDG will be used to help fund a conference which is taking place between July 1 and 3 at St David’s Park Hotel in Chester where some of the leading doctors in the world on the subject of CS from America, Japan, and France will be taking centre stage.

PPDG delivers the Government’s Welfare to Work strategy across the Midlands through Flexible New Deal, Work Focused Training and other employment initiatives. PPDG is using its vast experience of helping long-term unemployed people get back into work to help local jobseekers secure employment opportunities.

PPDG’s team of employment experts provides advice on benefits, confidence building, one-to-one support, CV and interview preparation as well as finding the right job or training course. In partnership with DWP, the Ministry of Justice and Jobcentre Plus, PPDG delivers a diverse range of employment and training initiatives and many ESF funded programmes. PPDG came fourth in The Sunday Times Best Companies to Work For 2011.