Meet YOUR Team

The FNDMattersNI Team is here to support YOU. Our goal is to be on YOUR team, supporting and encouraging you throughout your journey with Functional Neurological Disorders (FND).

Jeanette

Jeanette

In 2014 I was diagnosed with FND, and I had never heard of it. Quickly I found there were no specialist services for those with FND. That is when I began raising awareness amongst healthcare professionals as well as the community. Since that day we have been actively involved in raising awareness of FND in Northern Ireland.

Freda

Freda

I am Jeanette’s mother and have been with her throughout her FND journey. I have seen first-hand the distress caused by lack of information, diagnosis and services. My goal is to assist you and your family get the support, guidance and reassurance you need to deal with FND.

FNDMattersNI began as a mother and daughter team in 2018. We started a Facebook Peer Support Group to raise awareness of functional Neurological Disorders. From this, we have established a community support structure for those with this condition. As well as working with healthcare professionals to ensure that the needs of those with FND are met.

Northern Ireland’s Community and Voluntary Association

We are proud to say we have been accepted within the community. We are officially members of Northern Ireland’s Community and Voluntary Association (NICVA).

Northern Ireland Neurological Community Alliance

We have also been accepted by the Northern Ireland Neurological Community Alliance and proud to be members of niNCA

The Charity Commission

We are registered with the Charity Commission for Northern Ireland and are on their combined list.

The FND Society

We hope to become members of The FND society.

Other Northern Ireland Neurological Charities Alliance (niNCA) coalition member charities and support groups:

Syringomyelia Arnold Chiari Association (SACA)

Email: saca.info@yahoo.co.uk

Helpline: 078260040

Our Story

How We Got Started

In 2014 I was diagnosed with FND, and I had never heard of it. At first, I was sceptical, wondering if it was just another medical label just to keep me happy. I have been ill most of my life and had got used to being dismissed. All my life I had received different diagnosis and I was not sure any of them had been correct. Before my diagnosis, I was fed up of being told it was ‘all in the head’ I knew I was not imagining my symptoms and I was definitely not able ‘to pull myself together ‘.

My diagnosis changed my whole outlook on myself and my lifelong condition. Once I received all the correct information, I knew that this diagnosis was correct. It explained the vast number of symptoms and the unpredictability. I was satisfied that I had received the correct diagnosis, but very quickly dismayed to find out there was no specialist services for those with FND. I was not really surprised because not many people had heard of it. That is when I began raising awareness amongst healthcare professionals as well as the community.

Where We Are Now

I had the support of two doctors and through information sharing we have been able to provide structured support to those with FND and their family/carer. Yet I knew there was still very little awareness and those with the condition needed a lot more support as well as relevant services. That’s when I went to Freda (mum) and asked her to help.

Since that day we have been actively involved in raising awareness of FND in Northern Ireland. We organised Northern Ireland’s first awareness event in March 2019 with Dr Nigel Lyttle as one of our guest speakers, we were supported by many charities, as well as those with FND.

After this event we realised the need for services was urgent, so firstly we put a committee of trustees together and then applied to the National Lottery for a grant.

National Lottery Community Fund

National Lottery Community Fund

We were delighted to receive a grant of £9,750 from the National Lottery Community Fund to raise awareness of FND and to provide support to those living with the condition and their families. We would like to thank National Lottery players for making important work like this possible.