SearchOutcome of Fundraising Regulator investigation
- 9 March, 2022
- EDS UK news
At the end of 2017, we launched our 12-24 appeal to raise funds for diet and EDS research. While sufficient funds were raised and promising research has begun, following a complaint made in February 2021 about our appeal, the Fundraising Regulator has found that the appeal breached the Fundraising Code and requires EDS UK to treat the appeal as failed.
When the appeal was launched, donors were told that funds were being raised for a study led by Professor Qasim Aziz at The Wingate Institute for Neurogastroenterology in London ,working with Lisa Jamieson, a pharmacist and nutritionist. This study later became known as NutriMeD in hEDS. Following peer review by external scientists, it became clear that this study could not go ahead as planned.
When we launched the appeal we failed to include a statement to tell donors what would happen to their donations if the study was unable to proceed. This was a mistake and we regret it. We have since thoroughly reviewed and changed our fundraising practices to prevent it happening again.
Our beneficiaries want us to fund much-needed research into the possible relationship between diet and hEDS symptoms. That is why, in September 2020, before the Regulator had received the complaint, we decided to use the money raised to fund a study called CANDI-hEDS. This study is again led by Professor Qasim Aziz at the same Institute working with his colleagues Dr Asma Fikree and Dr Rabia Lalani and with Professor Peter Gibson of Monash University in Melbourne. Lisa Jamieson is not involved in the CANDI-hEDS study.
Whilst we let donors know that we were funding the CANDI-hEDS study, the Fundraising Regulator decided that we should formally have asked their permission before using their donations for this study.
Donors to the appeal have the right to have their donation returned. They can also choose to let EDS UK continue to use their donation for another charitable purpose similar to the one for which it was given (for example, the CANDI-hEDS study) by disclaiming their right to it. A simple disclaimer form needs to be completed to allow us to use the funds for a similar charitable purpose through a scheme established by the Charity Commission or by a court.
Donors can claim their donation up to six months after the date of any scheme made by the Charity Commission or the court designed to distribute left-over donations.
We have contacted all donors (where we have their details) to let them know this information. If you donated to the 12-24 diet and EDS research appeal and have not heard from us please get in touch (tel. 020 8736 5604 or email info@ehlers-danlos.org).
We would like to thank everyone who donated to the 12-24 appeal. We are passionate about funding high-quality research with the potential to improve the lives of those with EDS and HSD. That is why our board took the decision to go ahead with the CANDI-hEDS study. Supported by the generosity of donors, we look forward to funding more research likely to benefit those with EDS.
If you would like to read about the case in more detail it is summarised on the the Fundraising Regulator’s website.