We are thrilled to share that a recent Functional Neurological Disorder (FND) awareness event in Stamford drew over two hundred attendees, making it one of the largest gatherings of its kind in our area. FNDLincs was proud to co-host this day-long conference alongside local health partners, and the turnout far exceeded expectations. The energy in the room was incredible – people living with FND, their families, health professionals, and interested locals all came together to learn and support one another. This kind of response shows how much interest and need there is to talk about FND, a condition that has long been misunderstood.
What is FND? For those unfamiliar, FND is a neurological condition in which the brain and nervous system aren’t working properly despite having no structural damage. In simple terms, the “wiring” of the brain is intact, but the signals between the brain and body get scrambled or blocked. Because of this, people with FND experience very real neurological symptoms – things like limb weakness or paralysis, non-epileptic seizures, tremors, speech and vision problems, and more – even though scans and tests might not show a clear cause. It’s a bit like a computer with a software glitch rather than a hardware breakdown. FND can affect anyone at any age, and the symptoms can be truly life-altering. Unfortunately, many patients have struggled to get a diagnosis or proper support, partly because of misunderstandings about the condition. This is why events like the Stamford conference are so significant – they shine a light on FND and spread awareness that these symptoms are real and deserve care and understanding.
Event Highlights
The Stamford FND Awareness Event was packed with insightful talks and heartfelt personal stories. Some highlights from the programme included:
Personal testimonies: Several individuals living with FND (and parents of younger people with FND) bravely shared their stories. Their accounts really put a human face on the condition. For example, one local attendee described how she woke up one morning speaking with a completely different accent – a startling FND symptom that occurred overnight – illustrating just how unexpectedly this condition can impact someone’s life. Hearing these lived experiences helped everyone in the hall understand the daily challenges and emotions that come with FND, from the frustration of not being believed to the relief of finding a supportive community.
Expert speakers: We were fortunate to have a panel of medical professionals who specialise in FND. This included consultant neurologists, neuro-physiotherapists, and a neuropsychologist, all of whom have extensive experience with FND patients. They gave presentations on what might cause FND, how it can manifest in the body, and importantly, what can be done to help manage it. The experts discussed therapeutic approaches – for instance, techniques to “retrain the brain” through physiotherapy and occupational therapy, and the role that psychological support can play. They also emphasized that FND symptoms are genuine and treatable, which was validating for many in the audience.
Q&A session: The event featured a lively question-and-answer session where attendees could put their questions directly to the panel. This turned into a really informative discussion. People asked about everything from how to get an FND diagnosis, to what kinds of exercises might improve their mobility, to how to explain FND to friends and employers. The experts and patient representatives answered openly. It was clear that sharing knowledge in both directions – professional expertise and patient experience – helps everyone learn. By the end of the session, many misconceptions were addressed. For example, one common misunderstanding is that “nothing can be done” for FND, but attendees learned that with the right support (be it physiotherapy, counseling, or self-management strategies), many people do see improvement in symptoms.
For many attendees, it was the first time they had been in a room full of people who understand what FND is like. The atmosphere was one of relief and solidarity – people were nodding along as others spoke, maybe seeing their own story reflected in someone else’s. Carers (family members caring for loved ones) also connected with each other, sharing tips and empathy. Health professionals in attendance said they gained a deeper appreciation of the patient perspective of FND, which will no doubt influence how they work going forward.
Perhaps most importantly, the event helped chip away at the stigma and confusion surrounding FND. By having reputable doctors stand up and say “Yes, FND is real – here’s what it is and how we treat it,” those living with FND felt validated. A quote from one of the organisers stuck with us: “The case studies and expert knowledge we heard were moving and enlightening. There was clearly a public need for more information about FND.” In fact, interest in this event was so high that we had enquiries from people all across the country wanting to attend – underscoring that it’s not just a local issue but a widespread need.
Thank you to everyone who participated – our speakers, our volunteers, and every person who came along or helped spread the word. This successful day in Stamford was a huge step forward for FND awareness in Lincolnshire and beyond. We’re excited to build on this momentum. FNDLincs will continue working with our community and healthcare partners to keep raising awareness and improving support for those affected by FND. Watch this space for future events and initiatives, because after seeing what a difference a day like this can make, we’re more determined than ever to keep the conversation going!