© Copyright NEAD Trust registered charity in England and Wales 1131287. All Rights Reserved
Seizures & Symptoms
We are pleased to announce that we are now the UK’s first registered charity for NEAD - Registered Charity Number: 1131287
We are happy to announce that we have been awarded some funding from the national lottery big lottery fund
Co Founders: David & Michelle Porter-Reed
Charity Number: 1131287
David Porter-Reed Michelle Porter-Reed Jenny Ashton Natalie Carney
Dean Burns Joanne Reed
David Porter-Reed: Co- Founder & Chairperson of NEAD Trust:
‘We created the NEAD Trust as a means for us to find other sufferers & carers, as after Michelle (my partner) was diagnosed we were left feeling alone & isolated as their was no aftercare or support groups available. NEAD Trust in its original form was a basic website offering an open forum & limited information about the condition via links to various sources’.
In such a short time the Trust has gone from strength to strength offering regional support groups, secure on-line forum, printed information booklets & much more.
For the future we hope to fully extend our support network to cover the whole of the UK & to offer sufferers & their families’ permanent drop in clinics with trained councillors & advisors as well as telephone support lines. But this is only possible with continued support and donations.
Michelle Porter-Reed: Co- Founder & Secretary of NEAD Trust
‘Hi everyone, my name is Michelle Reed and I am a NEAD Sufferer. I was diagnosed with this illness in 2006, I looked everywhere for information and support for people with this illness and couldn’t find anything. I felt alone and afraid I had no help from the hospital or GP and I felt like my life as I knew it was over’.
So after a long talk with my partner and full time carer (he has had to give up work to look after me) David, we decided that this is not acceptable and that we had to do something. So we set up NEAD Trust. The purpose of the trust is to provide help and support to all of you who like me suffer on a daily basis with this illness and are left feeling alone, scared and vulnerable. Together we can give each other hope that we can still have a life even with this illness and that we are not alone, we are all here for each other.
Jenny Ashton: Trustee of NEAD Trust
‘Hi my name is Jenny Ashton; I'm 29 and engaged to Jason. We have a son Alfie, who is 20 months old. I am a Support Worker for the Children and Young People’s Service in Sheffield working in front line child protection alongside Social Worker's. I am a qualified Child Care and Education Worker and specialize in substance misusing families’.
We met Michelle and Dave at ante natal classes before we both had boys who both weighed 8lbs 2 oz's!!!!! We have stayed close ever since and I have the honour of being their bridesmaid next year. I had heard of NEAD before but was unaware of the complete disabling effect it has on people's life’s and the constant struggle to get people to listen to you, to support you, to believe you and find the correct treatment, if any at all. Michelle amazes me. She has turned an awful condition into something positive to help others, with the website and charity. I will do all that I can to spread the word and reach out to as many sufferers, their carers, friends and family as I can.
Natalie Carney – Trustee & Treasurer
‘Hello my name is Natalie Carney. I was asked by Michelle whom I have known for many years and who is a sufferer of this condition, to be a part of the trust. As I have a background in Accounts and finance I was put forward for the treasurer role, and after a meeting of the trustees I was appointed’.
I had very little knowledge of the condition, but through Michelle I now know a lot more and I am excited to be a part of this team.
Dean Burns: Trustee of NEAD Trust
‘Hello my name is Dean and I am a Trustee of the Trust. I was asked by Michelle and David to become a Trustee and I was happy to take on the role’.
My knowledge of the condition was non-existent before I met Michelle, I had never heard of Non Epileptic Attack Disorder. After being friends with Michelle for the last 4 years, I now have a much better appreciation of the illness and what sufferers go through. I am very happy to be part of the team and to raise awareness of this life changing condition.
Jenny Ashton: Trustee of NEAD Trust
‘Hi my name is Jenny Ashton; I'm 29 and engaged to Jason. We have a son Alfie, who is 20 months old. I am a Support Worker for the Children and Young People’s Service in Sheffield working in front line child protection alongside Social Worker's. I am a qualified Child Care and Education Worker and specialize in substance misusing families’.
We met Michelle and Dave at ante natal classes before we both had boys who both weighed 8lbs 2 oz's!!!!! We have stayed close ever since and I have the honour of being their bridesmaid next year. I had heard of NEAD before but was unaware of the complete disabling effect it has on people's life’s and the constant struggle to get people to listen to you, to support you, to believe you and find the correct treatment, if any at all. Michelle amazes me. She has turned an awful condition into something positive to help others, with the website and charity. I will do all that I can to spread the word and reach out to as many sufferers, their carers, friends and family as I can.
Joanne Reed – Trustee and Regional Sub Committee Chairman
‘Hi, my name is Joanne Reed & am a Family Law Solicitor currently living in London. Michelle is my younger sister & before she was diagnosed with NEAD I had never heard of the condition. I remember the first time I witnessed Michelle having a seizure; I couldn't help but burst into tears. I had never seen anything like it and had no idea what I should do’.
Even now, years later, I find it very difficult to witness. I wanted to become involved in NEAD Trust, not just to support my sister, but to reach out to other people & offer support. It took me years to really’. understand the condition & I have been touched by reading accounts from sufferers of the problems they have encountered due to the illness. If working for the Trust makes a difference to just one person’s life then it is all worth it. My emotion surrounding NEAD is now pride with the effort my sister & soon to be brother in law have gone to in order to make NEAD Trust the success it has become today.