From national attention to lasting support
Look what this community built in four months.
Help us keep up.
FND Connect has grown from one family’s free FND tool into a rapidly expanding network of information, practical support, volunteers, digital tools and local groups.
That growth tells us something important: the need was already there. Now we need the funding, fundraisers and partners to make sure the support can grow with it.
- Free support
- Built from lived experience
- Growing across the UK
Where it began
We built the support system we couldn’t find.
FND Connect started with a problem at home.
When FND and functional seizures became part of Emma’s everyday life, finding practical information and tools that reflected the reality of living with the condition was difficult.
So Matthew built SeizeControl: a way to record seizures and symptoms, find useful patterns and make healthcare conversations clearer.
It could have become a commercial product. Instead, we made it free.
People found it. Then they found each other.
One practical tool became information, community, local groups, practical help, training and a growing national network — far faster than we expected.
Read our storyLive impact
Four months changed everything.
These figures come from the same FND Connect systems that power our public Impact page. They update as the work grows.
Practical support requested£19,834
Funded by FND Connect£369.90
Still to fund£16,160.11
£3,303.99 of requested support has also been helped through signposting to another source. The still-to-fund figure accounts for both direct awards and signposted help.
The funding gap
Growth isn’t the problem.
Keeping up is.
Every person who finds FND Connect confirms that this support is needed. Growth also creates responsibility.
- More people are asking for practical help.
- More communities want local support.
- Our free digital tools need maintaining.
- Our volunteers need systems, support and coordination.
- Our information needs to stay useful, accessible and current.
The question is no longer whether people need FND Connect. It is whether we can build the capacity to support the demand.
Help us turn attention into lasting support.
Three ways to help us keep up
You don’t have to build FND Connect.
You can help us build what comes next.
Give
Help fund the work
Your support helps us respond to real demand: practical assistance, free tools and resources, local groups and the infrastructure that keeps support accessible.
Join
Become a Friend of FND Connect
Regular support gives us something one-off fundraising cannot: the ability to plan. Become a monthly Friend from £5 and help build support that can still be here for the next person.
Fundraise
Turn your idea into support
Walk. Run. Stream. Bake. Shave your head. Take on a challenge. Do something completely ridiculous. We’ll help turn your effort into support for people affected by FND.
Reliable support we can plan around
500 Friends for FND
We’re looking for 500 people who believe nobody should have to face FND alone.
From £5 a month, a Friend of FND Connect helps give us predictable income we can actually build around. One Friend is £5. Five hundred Friends could transform how confidently we plan what comes next.
4 / 500 Friends496 to the target
Show the elephant.
Talk about FND.
Pass it on.
A national awareness action
There’s an elephant in the room.
Thousands of people live with FND.
Too many people still haven’t heard of it.
Eric is FND Connect’s elephant mascot for a reason. Elephants represent strength, community, memory, care and staying with the herd when somebody is struggling.
Now he represents something else too: the elephant in the room. FND changes real lives across the UK, yet many people still have no idea what it is until it happens to them or someone they love.
- 1Show the elephant
Share Eric, an elephant toy, a drawing, a photo or your own creative version.
- 2Say something true
Share one fact about FND, something you wish people understood, or your experience if you are comfortable. Nobody should be pressured to disclose health information.
- 3Pass it on
Tag or nominate three people to keep the conversation moving.
- 4Help if you can
Donate, become a Friend or start a fundraiser. A donation is not required to take part.
What funding makes possible
What does “keeping up” actually mean?
Practical help
Responding to requests for equipment and practical support where the programme permits.
Keeping digital tools free
Maintaining and developing SeizeControl and other free FND Connect tools.
Local support
Helping groups remain sustainable and enabling new communities to develop support.
Information people can use
Keeping plain-English resources available, current and accessible.
Volunteers
Giving the growing network the systems, support and coordination it needs.
Professional awareness
Improving understanding of FND among services, employers and professionals.
Real people, not just numbers
Behind every number is a person.
These are published, moderated stories shared by people affected by FND in their own words.
01
Tiffany Robinson · I live with FND
Life isn’t over just different now
Day to day is really hard. I miss the life I had before. I often have seizures. I am in a wheelchair full time. I have tremors frequently. My legs randomly stop…
Read the story
02
Kimmy · I live with FND
Living and loving life despite FND
My Story My story began 41 years ago. Saying that out loud makes me feel old, but by sharing the "why" and "how" of my journey, I hope to give others hope. It…
Read the story
03
Lee · I live with FND
Living with FND and CHRONIC FATIGUE
The day to day journey is a struggle tbf. From when I awake I'm exhausted, heavy headed and when I do step out of bed I'm extremely wobbly amd far from function…
Read the story
National attention
People are starting to notice.
Our Hull support group recently attracted local media coverage and a significant public response.
That attention matters because every article, share and conversation can reach somebody who has never heard of FND Connect before.
National visibility gives us an opportunity. The challenge is turning that attention into the capacity to help more people.
Businesses and partners
Want to help us build something bigger?
Individual donations matter enormously. The next stage of FND Connect will also need organisations that want to build alongside us.
We want to hear from businesses, funders and organisations interested in supporting:
- Local support
- Practical assistance
- Digital tools
- FND awareness
- Professional education
- National expansion
Trust and transparency
You should know what you’re supporting.
FND CONNECT CIC is a Community Interest Company created to support people affected by Functional Neurological Disorder. We believe impact should be visible.
Questions, answered plainly
Before you help us keep up.
Clear answers about what FND Connect is, how support works and how to take part.
What is FND Connect?
FND CONNECT CIC is a UK Community Interest Company created to support people affected by Functional Neurological Disorder through clear information, free digital tools, community, local groups and practical help.
Is FND Connect a charity?
No. FND Connect is currently a Community Interest Company (CIC), not a registered charity.
Where does my money go?
Funding supports FND Connect’s community-purpose work, including practical assistance, free tools and information, local support, volunteer coordination and awareness. Live impact information explains what has been delivered and what demand remains.
Can I give monthly?
Yes. You can become a Friend of FND Connect from £5 a month through the existing secure monthly-support journey.
Can I fundraise for FND Connect?
Yes. FND Connect’s fundraiser setup helps you create a page for a walk, run, stream, bake sale, challenge or your own idea.
Can a business support FND Connect?
Yes. Businesses, funders and organisations can contact FND Connect about practical support, digital tools, awareness, professional education and responsible national growth.
Do I have to donate to join The Elephant in the Room campaign?
No. Awareness participation is free. You can show an elephant, share something true about FND and pass the conversation on without donating or disclosing personal health information.
Can I use Eric or the campaign assets?
Please use only official FND Connect campaign artwork and follow the licensing guidance supplied with it. Contact FND Connect before adapting Eric or the FND Connect identity.
Help us keep up
We know the need is there.
Now help us build the capacity to meet it.
In a few months, FND Connect has already become something far bigger than the tool it started with. We want to grow responsibly because the community needs more.
If you believe people affected by FND deserve information, practical help and somewhere to belong, help us build what comes next.
Look what this community has already built.
Imagine what we can do if the funding catches up.