Functional Neurological Disorder (FND) is a debilitating and distressing condition about which very little is known. Dawn Golder, who lives in Banbury and is herself a sufferer of FND, was keen to establish a UK branch of the international charity founded in America in 2014.

The brain of a sufferer from FND is structurally normal, Dawn explains, but functions incorrectly because the central nervous system fails to send and receive signals correctly. Sadly, FND accounts for up to one third of all neurological outpatients’ attendance – which means that the total number of FND patients worldwide approaches 300 million. Dawn says that it is “a very isolating, confusing and debilitating illness” and it is vital that sufferers feel supported and recognise that they are not alone. Dawn was unsure how to go about establishing/setting up her new charity and so contacted OCVA’s business development manager, Angela Cristofoli, to discuss what was required to become a registered charity. FND finally became a registered charity in June 2017.

Now an official charity in the UK, FND Hope is able to focus on its mission which is to promote awareness of the condition and offer support to affected individuals. As a little known condition, Dawn explains that it is vital to raise the awareness and understanding of FND amongst the general population. Through fundraising, FND Hope is seeking to inform people about the symptoms, nature and causes of FND as well as educating a wider public about the ways in which the condition can be prevented or treated. Working alongside the Genetic Alliance, the national charity working to improve the lives of patients and families affected by all types of genetic conditions, FND Hope is planning to coordinate a voluntary patients’ register which will make it easier for GPs and other medical professional to offer appropriate courses of treatment. Working in this way with medical and allied professionals to promote a better understanding of FND, the long-term aim of the charity is to improve medical protocols and raise ethical standards for the treatment of FND through personal contact, committed advocacy and improved training. FND further aims to improve the quality of FND care as well as educating patients to improve their health and well-being.

As with all conditions that lead to isolation for sufferers, Dawn emphasises the need for support and she explains that founding FND Hope UK has helped her to know that she was not alone. Dawn is proud to be volunteering for FND Hope as she know that she is making a difference both to the FND community and, indeed, to herself. As well as supporting national fundraising initiatives, Dawn is organising a monthly pub quiz which will be held in Banbury. For more details about FND Hope please visit FNDHope.org

If you would like help in setting up an organisation, please contact OCVA who will be happy to offer assistance and advice.