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New base for Stourbridge charity Max Appeal
Updated 10:19am Wednesday 26th March 2014 in News
A STOURBRIDGE charity which continues to go from strength to strength has celebrated the opening of a new office on an historic site.
Paul and Julie Wootton set up Max Appeal 15 years ago after the death of their four-month-old son Max, who suffered from genetic condition DiGeorge syndrome, and they have continued to run the fast-growing organisation from an office at their home in Meriden Avenue, Wollaston.
But this week marked a new chapter for the charity which has opened a new base at Amblecote’s Ruskin Mill Trust site - home to the Glasshouse College and Ruskin Glass Centre.
Julie, chairman of Max Appeal’s board of trustees, said: “We’re really flattered to think that a fantastic place like Ruskin thinks we’re worthwhile enough to be on their premises.”
She said the launch, on Monday March 24 - attended by Stourbridge MP Margot James, was organised to thank volunteers and businesses for their loyal support which has helped Max Appeal to become an international concern.
From humble beginnings the charity has grown to help educate and support families across the world affected by DiGeorge syndrome, known as 22q deletion, which afflicts sufferers with conditions including heart problems, speech and language difficulties, muscular and spinal problems, mental health problems and faulty immune systems.
Mum-of-two Julie has also been steering forward official recommendations for healthcare providers on how to treat DiGeorge syndrome sufferers.
In April 2013 the first National Consensus Document on 22q11 deletion syndrome was launched at the House of Commons to set a standard that can be applied to the diagnosis and management of people with the complex condition, which has been frequently misdiagnosed.
Glasshouse College admissions chief Elizabeth Wood, whose 13-year-old daughter Amelia has DiGeorge syndrome, said the charity has made a huge difference.
She explained: “Max Appeal has transformed the medical, educational support and care children and adults with Di George are offered today.
"As a family we will be eternally grateful to Julie as her support guided us through what was back then very patchy knowledge of the syndrome, and at times the information Max Appeal produced has been literally lifesaving in Amelia’s case.
"By offering to support Max Appeal I feel the Trust are recognising the outstanding contribution Julie and Max Appeal have made to families across the UK and globally."
MP Margot James also praised the Woottons "for their determination and passion" to help those affected by the condition.
She added: "They've done so much, with wonderful support from volunteers."
As a result of her work with Max Appeal - Julie, aged 48, is now chairman of the trustees of the Children's Heart Federation. She is also on the British Society for Immunology's Patient and Public Engagement Forum; is part of the Cardiovascular Care Partnership-UK and has been involved with the NHS England congenital cardiac review.
While Paul, aged 51, has taken part in an array of road races to raise funds and the profile of Max Appeal which has two official charity places in next month's London Marathon and 25 places in the Great North Run taking place in September.
Anyone interested in running the Great North Run for Max Appeal can email email@example.com or visit www.maxappeal.org.uk.
The charity is also seeking volunteers for a bag pack at Tesco, Cradley Heath, on Saturday April 5. Email firstname.lastname@example.org or call 0300 999 2211.
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