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Children's cancer charity under investigation Children's cancer charity under investigation
(35 minutes later)
A charity that raised money for children with an often lethal cancer to travel abroad for therapies the NHS did not provide or approve is being investigated by the Charity Commission.A charity that raised money for children with an often lethal cancer to travel abroad for therapies the NHS did not provide or approve is being investigated by the Charity Commission.
The bank accounts of Families Against Neuroblastoma (FAN) have been frozen.The bank accounts of Families Against Neuroblastoma (FAN) have been frozen.
The commission has appointed two independent interim managers "to take control of the charity and its assets to the exclusion of the existing trustees" and ensure that families for whom money has been raised can access it while the investigation takes place. The commission has appointed two independent interim managers "to take control of the charity and its assets to the exclusion of the existing trustees" and ensure families for whom money has been raised can access it while the investigation takes place.
The Charity Commission's action follows complaints by the parents of small children with neuroblastoma, including Lauren Downie. She took her seven-year-old daughter Olivia for treatment at a clinic in Mexico in 2012, following a fundraising appeal by FAN. While there, Olivia fell into a coma but the family were told there was insufficient money to bring her home. Downie was forced to appeal publicly for funds and eventually was able to fly back with her child, who died in Scotland a few days later. The Charity Commission's action follows complaints by the parents of small children with neuroblastoma, including Lauren Downie, who took her seven-year-old daughter Olivia for treatment at a clinic in Mexico in 2012 after a fundraising appeal by FAN. While in Mexico, Olivia fell into a coma but the family were told there was insufficient money to bring her home. Downie was forced to appeal publicly for funds and eventually was able to fly back with her child, who died in Scotland a few days later.
Other parents have complained that they could not access money raised from the public via Facebook and other appeals for their child's treatment.Other parents have complained that they could not access money raised from the public via Facebook and other appeals for their child's treatment.
In a statement, the commission said: "The regulator is investigating a number of concerns but its focus is a lack of a proper governance structure at the charity, and as a result the risks that may arise to the charity's funds or other property."In a statement, the commission said: "The regulator is investigating a number of concerns but its focus is a lack of a proper governance structure at the charity, and as a result the risks that may arise to the charity's funds or other property."
The investigation will examine the financial management of the charity, the accounting treatment of funds it raised, its administration, governance and management and whether or not its trustees have complied with their duties and responsibilities under charity law. The investigation will examine the financial management of the charity, the accounting treatment of funds it raised, its administration, governance and management, and whether or not its trustees have complied with their duties and responsibilities under charity law.
The charity's sole trustee was Linza Corp, who lost a child, Max, to neuroblastoma. Attempts by the Guardian to contact her were referred back to the Charity Commission which has appointed temporary management at the charity. The charity's sole trustee was Linza Corp, who lost a child, Max, to neuroblastoma. Attempts by the Guardian to contact her were referred back to the Charity Commission, which has appointed temporary management at the charity.
The online appeals are for money to send children for therapies that the NHS does not provide and which many experts believe are not likely to be effective. Families, desperate to do everything to try to save the life of a small child, are not willing to give up when they are told by NHS doctors that there is nothing more they can do. Olivia Downie travelled with her mother to Mexico for a treatment called sono-photodynamic therapy (SPDT), which its advocates claim is a natural, non-invasive treatment using sound waves and a light-sensitive substance which is said to "explode" with oxygen and kill the cancer cells. It is said to be based on a treatment called photodynamic therapy (PDT) which can attack cancers, but only where it is possible to get light from a laser close to the cancer cells, as in lung cancer. The online appeals are for money to send children for therapies that the NHS does not provide and that many experts believe are unlikely to be effective. Families, desperate to save the life of a child, are not willing to give up when they are told by NHS doctors that there is nothing more they can do.
Prof Kevyan Moghissi, one of the UK's foremost experts on PDT, told the Guardian in 2012 that there was no good evidence for SPDT. "In my opinion, SPDT is not a clinical reality," said Moghissi, a heart and lung surgeon who was involved in the earliest clinical trials of PDT and edits the leading journal in the field. Olivia Downie travelled with her mother to Mexico for a treatment called sono-photodynamic therapy (SPDT), which its advocates claim is a natural, non-invasive treatment using sound waves and a light-sensitive substance that is said to "explode" with oxygen and kill the cancer cells. It is said to be based on a treatment called photodynamic therapy (PDT), which can attack cancers, but only where it is possible to get light from a laser close to the cancer cells, as in lung cancer.
Prof Keyvan Moghissi, one of the UK's foremost experts on PDT, told the Guardian in 2012 that there was no good evidence for SPDT. "In my opinion, SPDT is not a clinical reality," said Moghissi, a heart and lung surgeon who was involved in the earliest clinical trials of PDT and edits the leading journal in the field.
Downie told the Guardian after her return that she felt the NHS had done all it could for Olivia, but the options ran out. She deplored the lack of research into a devastating disease, which left families struggling to find help. She took her child to Mexico, she said, in the hope of relieving her pain rather than in the expectation of a cure. "People are having to make random stabs in the dark to try to prolong their children's life or quality of life," she said. She said she deeply regretted making the trip.Downie told the Guardian after her return that she felt the NHS had done all it could for Olivia, but the options ran out. She deplored the lack of research into a devastating disease, which left families struggling to find help. She took her child to Mexico, she said, in the hope of relieving her pain rather than in the expectation of a cure. "People are having to make random stabs in the dark to try to prolong their children's life or quality of life," she said. She said she deeply regretted making the trip.