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.
For more information about Pertemps People Development Group,
please visit their website here: www.ppdg.co.uk