About us
Our journey so far
It All Started in My Hospital Bed
I never thought that one of the most frightening periods of my life would become the foundation for something that would eventually connect people all over the world.
It began in a hospital bed. I was a young mother of three, paralyzed down the right side of my body and shaking violently. Cognitive impairment made it nearly impossible to communicate with the people I loved, and I suddenly found myself unable to feed, dress, or wash myself. I was petrified, trapped in my own body, and desperately trying to make sense of what was happening. Two days later, a neurologist delivered a diagnosis made of three words I had never heard in my life: Functional Neurological Disorder. FND.
Having a name for what was happening offered a brief moment of clarity, but it didn’t make anything feel better. If anything, it left my family and me with even more questions. None of us understood what FND meant. My mother had over twelve years of therapeutic experience, and my sister Cadence was studying psychology and counselling, yet neither of them had ever encountered Functional Neurological Disorder either.
So we did what families do when someone they love is terrified: we searched for answers. We asked questions, talked through every possible scenario, and tried to understand why my body had suddenly stopped doing what I wanted it to do. We were plagued by questions that felt impossible to answer: Would I ever recover? Would I walk properly or drive again? How was I going to look after my children, and what would our lives look like once I left the hospital?
We hoped the healthcare professionals around us could offer reassurance, but we quickly realized there was a critical lack of knowledge about FND on the ward. When you are lying in a hospital bed, paralyzed down one side and terrified for your future, that lack of understanding matters more than words can express. The environment only compounded our fear. I was a young mother surrounded by patients living with dementia or receiving end-of-life care. Looking around that room, I remember thinking, How has my life ended up here?
What we needed most in those dark moments wasn’t just clinical information—we needed another human being. I desperately wanted a person who understood what this felt like; someone who could look me in the eye and say, “I know this is frightening, but I’ve been there, and here is what helped me.” We needed someone my family could turn to when they felt helpless, and above all, we needed hope. We needed to know we weren’t the only family trying to navigate this, that life wasn’t over, and that support existed. Yet, no matter where we looked, we couldn’t find what we needed.
I remember constant conversations with my mother and family coming back to the exact same questions: Where are the people? Where is the support? Who do you turn to when you go home? Somewhere in the middle of all that fear, frustration, and uncertainty, a small seed began to take root. If what we needed didn’t exist out there, maybe we could help build it.
Turning Pain Into Purpose
I couldn’t change what had happened to my body, but I realized I could choose what I did with the experience. I decided to start talking. I began sharing my journey openly on social media, not as an expert, but simply as someone trying to understand her own diagnosis while searching for anyone else who might be going through the same thing.
Then something happened that I never could have anticipated: people started finding me. Mothers, fathers, partners, carers, and whole families who had been struggling quietly in isolation reached out. Messages began arriving from across the UK, and soon from all over the world. People shared their personal stories – some heartbreakingly difficult to read, others full of resilience and hope – but almost all of them began with some version of the same sentence: “I thought it was just me.”
Suddenly, I realized I was far from alone. There were people everywhere trying to navigate shifting symptoms, medical appointments, changing relationships, work, parenting, independence, and completely upended lives. They were trying to explain a condition they barely understood themselves to families who desperately wanted to help but didn’t know how. They felt frightened, dismissed, isolated, and exhausted by constantly having to justify their illness.
Slowly and organically, something beautiful grew out of a deeply painful experience. People began connecting, conversations grew into genuine support, support turned into lasting friendships, and isolation gave way to community. What started as my personal story was transforming into our collective story, and that was the moment FND Together We Rise was truly born.
From My Story to Our Community
As our community expanded, it became clear that this initiative was never meant to be about just one person. My family stepped up to support the movement, people with lived experience came forward to offer their voices, and healthcare professionals generously began sharing their knowledge. Partnerships formed, relationships deepened, and people who believed in our vision rallied to help us build something lasting. Somewhere along the way, “I” officially became “we.”
Our vision matured alongside our growth. We knew that lived experience had to remain the permanent heart of FND Together We Rise, ensuring we would never forget what it felt like to be the person sitting in that hospital bed searching for answers. At the same time, we recognized that lived experience alone wasn’t enough. If people were going to trust us during the most vulnerable moments of their lives, we had a fundamental responsibility to keep learning, working safely, and recognizing the boundaries of our own knowledge.
That commitment led us to expand our leadership. When Bernadette joined us as a Director, she brought invaluable skills, professional knowledge, and strategic expertise to our Community Interest Company (CIC). Today, FND Together We Rise bridges the gap between lived experience and professional practice, combining peer support with safe practice, education, and continuous learning.
Our work now spans community support groups, educational initiatives, advocacy, nervous system and wellbeing tools, guest professional sessions, resources for carers, public awareness campaigns, and collaborative projects with healthcare providers and institutions. We have grown far beyond anything I could have envisioned from that original hospital bed, but no matter how large we become, our core purpose remains unchanged.
Behind every single diagnosis is an entire life. There is a mother wondering how she will care for her children, a father worrying about his job, a partner trying to support the person they love, or an individual wondering if they will ever drive, work, socialize, or feel like themselves again. Sometimes, it is simply a person sitting at home in the dark, wondering if anyone on earth truly understands what they are experiencing.
Our mission goes far beyond raising awareness of a neurological condition; it is about people. It is about helping someone feel less alone, driving conversations that break down stigma, making complex medical information human and accessible, and providing practical tools for recovery. Most importantly, it is about reminding every person we touch that whatever FND may have changed in their life, it has not taken away who they are.
Together, We Rise
People often ask about the meaning behind our name. For us, Together We Rise says everything.
Though this journey started with my diagnosis, it no longer belongs to me. It belongs to every person who has trusted us with their story; every family member who has stood by a loved one; every professional who has taken the time to listen; every volunteer, fundraiser, and partner organisation that has opened a door; and every individual with FND who has walked into one of our spaces feeling nervous and isolated, only to realise: “These people get it. I am home.”
What began during one of the most terrifying times in my life has become a global network of support and understanding. We are immensely proud of how far we have come, but we are nowhere near finished. We are still listening, learning, and growing every day. We will keep asking questions, building bridges, and creating the precise support system my family and I were searching for in those early days: understanding, connection, real community, and genuine hope.
Underlying everything we do is one simple, unshakeable belief: No one affected by FND should ever feel they have to face it alone.
This is our story so far, and together, we are only just beginning.