Lived Experience Group

At Neuronostics, we believe it is essential to include the expertise of people with lived experience of epilepsy in the development of our technology and products.

Members of our Lived Experience Groups work closely with us to share their own experiences of epilepsy, and help ensure our technology is developed with the perspectives of those who will ultimately benefit from it. Everyone’s experience of epilepsy is different, and we try to ensure we include as diverse a range of experiences as possible.

Members of our Lived Experience Group include:

Adam

Adam is 32 years old & has been living with focal & generalised seizures since he was 8 years old. He joined the Lived Experience Group to share his experiences with Neuronostics to help with their projects.

Amba

Amba is studying English Lit at Swansea Uni. Travelling is her addiction – her passport is her sidekick. Diagnosed with epilepsy relatively recently, she wants to be involved in this study to provide hope for the masses and learn more about epilepsy research!

Dan

Dan is the Performance Analyst at Watford Football Club and is passionate about raising awareness for epilepsy. He wants to help other people with epilepsy by being part of research – enabling people to feel safer, more confident and get answers to help with their condition.

Holly

Holly has had Epilepsy for 17 years. She’s looking forward to contributing to the Neuronostics programme to help make advances in Epilepsy research.

James

James is a Brand Strategist based in west London, who also has epilepsy that is well controlled. James joined the Neuronostics BioEP Lived Experience Group to play a part in helping better the futures of other folks with epilepsy.

Jenny

Jenny is a mother of 3, a neuroscientist, researcher and person with epilepsy. She joined the Neuronostics LEG for BioEP to contribute to better care and quality of life for people through medical technology.

Leanne

Leanne has had complex epilepsy for many years, and is excited to be involved with the ‘At Home’ project with Neuronostics.

Lesley

Lesley has had epilepsy now for almost 48 years. Lesley is involved in a number of community pages and magazines for people with epilespy. She is looking forward to being a part of Neuronostics’ ongoing research!

Lottie

Lottie has lived with epilepsy since she was 15 years old. She has trialled most medications unsuccessfully. Five years ago, she had a VNS fitted which changed her life – it hasn’t taken the seizures away just decreased them dramatically.

Maya

Maya is 21 and student at the University of Manchester. Maya was diagnosed with epilepsy at 18 and has tonic-clonic seizures. Maya found out about Neuronostics through her Mum, who happened to be searching Epilepsy research. She’s looking forward to helping create products that could be really beneficial to people.

Paul

Paul has had epilepsy since he was 16. With his involvement with Neuronostics, he hopes to contribute toward developments which can benefit so many!

Rebbeca

Rebbeca is an artist, mum, former cabin crew member at Virgin Atlantic, and she has epilepsy! She’s loooking forward to becoming involved in epilepsy research with Neuronostics!

Richard

Richard is from Somerset & is currently working with his medical team to establish whether he has epilepsy following a seizure in April 2020. Richard has had a few more since & is learning to adjust.

Shannen

Shannen has been living with Epilepsy since she was 13. Although her condition has changed some things for her personally, she wouldn’t be the person she is today without it. “Epilepsy has pushed me to my limits but it won’t take away my dreams.”

Simon

Simon has been living with generalised seizures since the age of 14, however he considers himself extremely lucky to be able to say he has now been seizure free for 2 years. Simon has been an active advocate for people with epilepsy for several years and hopes to use his knowledge to help Neuronostics with this great project.

Staci

Staci was diagnosed with epilepsy in 2015. She wants to help improve things not just for her, but for everyone with with epilepsy – that’s why she joined the Neuronostics Lived Experience Group!

Stephanie

Stephanie is a legally blind visual artist and single mother of two who was diagnosed with epilepsy during her second pregnancy. Diagnosis turned her life upside down – she wants to build epilepsy awareness and hopes her involvement with Neuronostics can help benefit many like herself.

Torie

Torie has been living with epilepsy since she was 6. After a temporal lobe resection in 2013, she devoted her career to bridging that gap between clinicians, scientists, patients and carers. She finds epileptology, psychiatry and #medtech exciting, hence her work with Neuronostics!