Who we are
In October 2016, FND Action became the first charity to be registered in the UK; supporting those diagnosed with a Functional Neurological Disorder (FND) and advocating for the cause on a national level.
The charity was founded by a group of people who had been diagnosed themselves, and who wanted to come together to provide help and support to others.
‘We know what it is like to be diagnosed with a condition that you have never heard of, and which many medical staff either don’t know about or have an outdated understanding. Our goal with this website is to provide up to date information on all aspects FND.’
FND Action and its volunteers dedicate their time to supporting people diagnosed. We work with medical professionals, charities and organisations alike, to raise much-needed awareness to help improve accessible treatment. Our advocacy work is leading the way to better awareness and care.
To shine a light on Functional Neurological Disorder so that people diagnosed feel heard, supported and empowered.
Peer support: We aim to develop our website as a key resource for information, support and signposting through regular updates. We continue to provide online support groups for those diagnosed in the UK, their families and their caregivers. We recognise that having the opportunity to chat to other people diagnosed will eliminate isolation, and can have a positive impact on a condition that is still little known about. Our team will also continue to provide a caring hand and experience to be able to offer one-to-one support and guidance.
Empowerment: We aim to encourage and help people to achieve the best quality of life and improved wellbeing. We believe that whilst there is no magic cure, there is a lot that can be done to help towards recovery and/or management of symptoms.
Awareness: We aim to do everything we can to raise awareness of FND amongst the general public, healthcare sector, service providers and other related charities. We already have a strong social media presence, and aim to build on our advocacy work within areas such as education and social care.
Collaborations: We aim to continue to build on relationships with specialist health professionals, related charities and service providers. We understand that effective treatment and care of FND needs to have a holistic approach. We will also continue to assist researchers with project development and recruitment as we believe this is crucial for developing a better understanding of FND.
Meet The Team:
Meet Tom Plender, Trustee, Chair.
Tom is a musician, artist and FND campaigner from London UK. He had music lessons from an early age and went on to study drums, percussion and piano at the Guildhall School of Music. Throughout his late teens and early 20’s he worked as a professional musician performing with many of the leading jazz musicians in the UK. At end of the 1990’s he developed FND [Functional Neurological Disorder] which left him profoundly disabled and unable to continue his music career.
It took over a decade to find a diagnosis for this poorly understood condition, but in 2012 he met the neurologist Professor Mark Edwards, now recognised as a leading researcher in the field, and was part of the first wave of patients to receive a ground-breaking new treatment approach, mostly comprised of neuro- physiotherapy movement retraining. Tom is now committed to campaigning and creating greater awareness for FND and has been the subject of several television appearances and newspaper articles discussing his experience of the condition.
Meet Eric Rosser, Trustee.
Eric retired in 2009 from a business background that was almost entirely in the Retail Industry, where he held many senior management positions. This included thirty years in purchasing, controlling multi million pound budgets.
He became involved with FND Action when his daughter Kim, the charity’s CEO, was diagnosed with Functional Neurological Disorder. He saw how the charity was making a meaningful difference to those affected, and the potential it had to create positive change. He wanted to be involved, and has been a trustee and the charity’s treasurer since January 2017.
Originally from Wales, Eric lives with his wife in Cheshire and uses his spare time to pursue a variety of interests including Welsh Rugby, music, and reading a good thriller. His passion for walking has taken him up the country’s tallest mountains, and some of Europe’s best known long distance trails.
Meet James Shipley, Trustee.
James has had numerous roles within the voluntary sector, most recently as a community and events fundraiser at York Mind. He brings his experience within the voluntary sector, particularly fundraising, to the trustee board.
Two years after his symptoms began, James was diagnosed with functional seizures as well as Epilepsy – both conditions are now under control. Due to the lack of understanding about functional seizures leading up to his diagnosis, James found FND Action which helped him further understand the condition. The information provided inspired him to raise both money and awareness for the charity and the condition. He is an avid campaigner raising awareness for both FND and Epilepsy, as well as addressing the mental health impact that these may have on a person.
James now works within construction, monitoring a projects environmental impact and social value.
Meet Tim Nicholson, Trustee.
Dr Tim Nicholson is a Reader in Neuropsychiatry at the Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London, and leads the Neuropsychiatry Research and Education Group (NREG). He is an Honorary Consultant Neuropsychiatrist at the South London and Maudsley NHS Foundation Trust. His clinical and research work focuses on Functional Neurological Disorder (FND), immunopsychiatry and broader neuropsychiatric disorders – including those resulting from COVID-19.
He set up a pioneering specialist multidisciplinary clinic for FND in 2012 and has over 20 years of experience working clinically with FND. It was the topic of his PhD, and the majority of his subsequent research activity including leading on studies into mechanisms, outcome measures and novel treatments such as Transcranial Magnetic Stimulation (TMS) and more recently psychedelics and Virtual Reality. He has published over 100 peer reviewed papers, over half of which are on FND, edited a book on motor FND, written 7 book chapters on FND and multiple books on general and specialist pharmacology.
Tim is also co-chair of the patient liaison committee of the FND Society, and on the committee of the UK FND network. He is on the executive committee of the Neuropsychiatry faculty of the Royal College of Psychiatrist and the British Neuropsychiatry Association. He is secretary of the Fellowship of Postgraduate Medicine and chairs the MSc in Clinical Neuropsychiatry at the IoPPN.
Meet Tony Hunter OBE, Trustee.
A qualified social worker, Tony has over 40 years’ experience spanning a full range of health and social care related roles across public, private and charity sectors. His most recent full time role was Chief Executive of the Social Care Institute for Excellence (SCIE), a leading DHSC-supported social business and care improvement agency. Tony left in April 2020 to pursue a portfolio career. He has been a local authority Chief Executive and also Social Services Director in two authorities.
Tony currently chairs Bury Council’s arms length social care delivery organisation Persona, is a non-executive director on Jersey’s Health and Care Board, and is also a trustee at St Christopher’s Hospice in south east London. He has recently also been engaged in a range of consultancy and leadership development projects.
Functional Neurological Disorder afflicts Tony’s family. He is keen to do all he can to promote proper awareness and support for individuals and carers affected by the condition.
Meet Richmond Stace, Trustee.
Bio to follow ..
Meet Devon Oship, Trustee.
Devon is a masters level neuroscientist from Buffalo NY, U.S.A. Her academic work has focused on MRI applications with a strong focus on brain network behavior in disease and recovery. She also has an extensive background in neurodevelopmental disorders such as Tourette Syndrome.
In her early twenties she developed FND while in the midst of a study analyzing fMRI brain network data’s ability to predict successful rehabilitation of autoimmune neurological damage. This led to a joint endeavor between her and colleagues to apply principles from their own work to what was then known about her new diagnosis. The end result was complete remission of FND symptoms and a life-long passion for neuroscience education and advocacy as they pertain to stigmatized and misunderstood disorders such as FND.
Meet Kim Hearne, CEO.
Kim is the CEO and founder of FND Action. Her role is underpinned by her profound lived experience, conversing with hundreds of others in similar situations, and gaining knowledge through neuroscience developments. At the time of her diagnosis, in January 2014, there was very little support out there and medical care for the condition was sparse. This was the starting point of her passion to help others who were also suffering from severe disabilities that were being greatly neglected.
Over time Kim has developed a deep understanding of the struggles this community faces. This has equipped her with advanced skills to support and be a unified patient’s voice, and given her the knowledge needed to work towards better care and understanding through advocacy work and collaborations within the health and social care sectors.
As the CEO, lived experience continues to inspire and guide the charity’s mission, ensuring that it remains a leading beacon to support those diagnosed in the UK.
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