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OUR STORY

HOPE FOR EPILEPSY WAS FOUNDED IN 2012 BY SCOTT LIDDLE A PARENT OF A CHILD WITH COMPLEX EPILEPSY  

THIS IS SCOTT'S STORY

​​I set up HOPE for Epilepsy as my wife and I were struggling with our son’s seizures. We were feeling extremely isolated and overwhelmed. We knew that there must be families in a similar situation to us but where were they? We felt we would benefit from meeting other families that had a child with severe epilepsy.

 

Our friends were extremely sympathetic but they did not understand how we were really feeling. When I contacted all the national epilepsy charities I was amazed to find that there was no support group for families affected by epilepsy on London. When campaigning for an epilepsy nurse at Barnet and Chase Farm hospital I had garnered quite a lot of interest for a support group from parents who supported the campaign, so knew that there was a need for HOPE for Epilepsy.

 

I am pleased to say that HOPE for Epilepsy is now well established and we get new families attending all the time. HOPE London to me is a haven for children with epilepsy and their siblings to enjoy themselves and meet other kids in a similar situation. Hope is a place without barriers, where children, parents and carers can be themselves and know that the person they are talking to understands without judgment.

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OUR TEAM

We have a wonderful team of trustees, advisors and

session volunteers. All the team give their time to HOPE for Epilepsy for FREE!

 

The team is made up of parents who have children with epilepsy, epilepsy professionals, educational professionals, scientists and medical professionals from some of the top UK paediatric hospitals. We have a fantastic group of young people who give their time to help run the Family Support Sessions and Day Trips.

WHAT WE DO

WE HELP FAMILIES WITH CHILDREN AFFECTED BY EPILEPSY

We offer support through our three key initiatives: HOPE Family Support Sessions, HOPE Family Day Trips and our HOPE Anti-Suffocation Pillow Project.

HOPE FAMILY
SUPPORT SESSIONS

Our monthly sessions are held in a special needs school in North London, there are fantastic facilities for children to enjoy, we also provide entertainment

and food for all the family. 

 

Sessions are free of charge and are a much needed chance for parents to meet other parents, talk to some of our medical experts or to enjoy some respite while volunteers take care of their children.

HOPE ANTI-SUFFOCATION
PILLOW PROJECT

​Anti-Suffocation Pillows have ventilation holes. These allow better air flow around the face which helps a child to breathe more easily if they have a seizure while lying face down. These pillows can offer much needed peace of mind for the child and carers. 

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Through fundraising HOPE are able to offer FREE  Anti-Suffocation Pillows to young people with epilepsy living in the UK.

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HOPE
FAMILY DAY TRIPS

We offer fun days out and experiences for families as a form of respite. Outings can sometimes be stressful or overwhelming for our children and families, so we work closely with the venues to make sure that the visit is as seamless as possible. 

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We want children with epilepsy, and also their siblings, to be able to enjoy these experiences like other young people are able to do.

Hope for Epilepsy London

Hope for Epilepsy London

MEET THE TEAM

It is important for us to have trustees and advisors who can bring different experiences to the table and help support the charity. Click on the photos below for our trustees story on what HOPE for Epilepsy means to them and their motivations for becoming part of the team.

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Nadine Gurr PhD.

Chair 

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Andrea Ryan

Vice Chair 

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Dr Sophie Bennet

Trustee & Patron 

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Charles Steward Ph.D

Patron & Advisor on Genetics

Thea team

“I was so relieved when I found HOPE and talking with the Team helped me so much. Your kindness, advice and generosity, sending us an Anti- Suffocation Pillow when I didn't even know my son needed one, overwhelmed me. I cried the day we received it as the gesture and your knowledge just brought so much comfort and relief. To know that someone knew what we were going through was a godsend.

I am so grateful for all the information shared with me, and talking with the Team at the first HOPE session we attended, brought such clarity to the situation. We walked out of the appointment where my son got his diagnosis and it felt like free fall. We weren't signposted to anywhere like HOPE, we were merely given a booklet. When receiving any information I think the mind ricochets to all the possible scenarios ahead some more plausible than others.

I threw myself into learning as much as I could about epilepsy while still slightly being in denial about it all, by telling my self that our situation didn't seem that bad in comparison to others. I remember attending one HOPE session and one of the Team said to me, “Why compare yourself? “ Your son has epilepsy and you have to watch your little boy have seizures, so it's ok to not feel great! Of course they were right, and allowing myself to think that, helped us as a family to move forward. Epilepsy is a part of my sons life, but it doesn't define him.

Anyhow, I just wanted to make everyone aware of how grateful I am that HOPE exists, and for all the wonderful people who are involved.”

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Testimonial from a HOPE Parent 

June 2020

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