FND Connect hopes those living with the condition will feel ‘less alone’
An interactive ‘Spark Map’ is helping to make FND more visible around the UK(Image: fndconnect.org.uk)
A new community interest company (CIC) has been launched in Hull that seeks to help people with a “common but often misunderstood” neurological condition. Functional Neurological Disorder (FND) is a condition where the brain’s software produces real symptoms such as functional seizures, weakness, tremor, speech changes, pain and fatigue.
Matthew Gerdes-Hansen is the founder of FND Connect, a non-profit organisation that is looking to transition to full charity status. It has already seen more than 1,000 “Sparks” from people lighting up an interactive map to make FND more visible around the UK, in the four months since launch.
Matthew created FND Connect after watching two family members face FND with “very little information or support to turn to”. He said: “FND is something most people haven’t heard of – including doctors. But it has a massive impact on people’s lives.”
FND Connect began with SeizeControl – free software for logging functional seizures and symptoms, built from lived experience because existing apps assumed epilepsy. “In a little over four months that software became a CIC, a free Discord community, grant-funded practical help, and a live Spark Map that makes an invisible condition visible.”
FND Connect aims to be the go-to place for people affected by FND, their families and wider support network. The dedicated website that has been set up offers lots of different sections, including understanding FND, living with the condition and treatment and recovery.
It also lists practical help, from applying for benefits and grants to adaptations and transport, and welcomes people to become volunteers, fundraisers and FND “champions” who can help more people access free support. There are also lived experience case studies that people can read.
“We’ve got an in-person support group – we’ve got virtual groups at the minute – coming to Kingswood; it will be up and running in the next six weeks,” said Matthew. “Hull is where we want this to begin, but the ambition is much bigger.
“Our long-term goal is to use the Hull group as a blueprint for a nationwide network of volunteer-led FND Connect Support Groups across the UK, helping communities create the support that is currently missing locally. Many people who receive a diagnosis are then left struggling to find practical support, reliable information, or a local community that truly understands what they are living with. We’re working to create a safe and welcoming place for people with FND, their families and carers to meet others, access trusted information and feel less alone.”
Did you know you can make Hull Live a preferred source of Hull news in Google, which will mean you get more of our breaking news, exclusives, and must-read stories straight away? Here’s more information about what this means and how to do it – you can also do it straight away by clicking here .