Celebrity patrons of Childs Hill charity ‘miffed’ after Downing Street cancels invitation
PUBLISHED: 15:26 16 January 2017 | UPDATED: 17:11 18 January 2017
Two celebrity patrons of a Childs Hill charity were left “really miffed” after being told they could no longer attend a reception at 10 Downing Street – while on the road to Westminster.
The duo – who have asked not to be named – were invited to join a group from the Lowe Syndrome Trust for the Local Charities Day Reception late last year after co-founders Andrew and Lorraine Thomas were told they could bring two notable guests.
After being informed of the invitation “out of the blue”, Mrs Thomas had to desperately phone around all the charity’s patrons to see whose schedule was free.
But when she managed to recruit two big-name supporters to join them, a last-minute phone call came in from a press officer “disinviting” his famous friends – because Downing Street “didn’t want any celebrities” at the December 14 event.
Mr Thomas, whose charity funds medical research into the genetic disorder Lowe syndrome, said: “The celebrities were really miffed.
“You have to take your passport and everything – it’s a bit of a fuss.
“I managed to get two celebrities to come, after huge effort, but someone in Downing Street obviously didn’t want them there.”
He added: “At one time they wanted celebrities, but under the headmistress [Prime Minister Theresa May] it seems they no longer do.”
Mr and Mrs Thomas were invited to the event by the Department for Culture, Media and Sport (DCMS) to meet ministers in recognition of the achievements and dedication of a small charity run by unpaid volunteers, and an example of what a small local charity can achieve to inspire others.
Mr Thomas said he was “delighted” to go, stressing that the trust – created in 2000 by Mr and Mrs Thomas after their son was diagnosed with Lowe syndrome – is finding it “ever so difficult” to constantly raise money.
“The main media companies all focus on the big charities so it’s hard for smaller ones to get any funding,” he said.
He added: “We’ve got to pay for postage, accounts, IT – it’s all a real pain, but it’s all got to be raised.”
The charity, which is run by volunteers including medical professionals and funded solely through donations, works with the National Institute for Health Research.
It initiates global medical research into the disorder as well as family support, with genetic research projects in Perdue University in the USA, Manchester and University College London Hospitals.
Lowe syndrome is a genetic disorder that can occur with no family history, affecting boys with multiple physical and mental handicaps, including cataracts in both eyes, muscle weakness, kidney problems, cysts, brittle bones, arthritis, poor growth, mental impairment with behavioural problems and epilepsy.
The DCMS has not responded to a request for a comment.
Learn how you can help the Lowe Syndrome Trust while eating out here.
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