Hear Her Voice 2026 brought together an extraordinary room of women, girls, families, clinicians, supporters and advocates to share lived experiences of epilepsy with honesty, courage and hope.
From profoundly moving personal testimonies to open conversations about diagnosis, education, independence and the emotional realities of epilepsy, the morning highlighted the importance of lifting up women’s and girls’ voices and the power of doing so together.
Held at The Conduit in London, the event created a space where guests and speakers felt seen, understood, and connected through shared stories.
Hosted by Young Epilepsy supporter Ellie Henry and broadcaster Jennie Gow, and centred on three powerful panel discussions, the morning reflected on the different stages and perspectives along the epilepsy journey.
Family journeys and early experiences of epilepsy
Long-term Youth Voice Network member, and star of Netflix hit, Run Away, Ellie Henry hosted the first half of the event. Ellie was joined by Young Epilepsy ambassador, Sam Bailey, who opened the conversation by sharing her experience when her son Tommy was recently diagnosed, the first seizures and the impact on her family.
Ellie was also joined by mum of four, Holly Steer, who spoke about the complex medical needs of her two boys living with epilepsy whilst also balancing their needs of non-verbal autism and how this plays out in everyday family life.
Growing up with epilepsy: education, independence and identity
The second panel brought the focus onto young adulthood and the challenges of growing up with epilepsy. 18-year-old Youth Voice Network member, Elina, opened up about diagnosed at 8 and how hiding her anti-seizure meds became a way of trying to fit in with her friends.
Long-term Young Epilepsy supporter, Olivia spoke about the challenges of starting secondary school with an epilepsy diagnosis, seizures at school and tackling freshers week at uni.
Finally, Latifa shared her experiences taking control of her medical care from her parents as she grew up and more recently the new challenges faced when becoming pregnant and understanding how her epilepsy and medications would impact this stage of life.
Mothers through caregiving, advocacy and system challenges
The final panel, hosted by returning Hear Her Voice 2025 speaker, Jennie Gow, herself a mother of a child living with epilepsy, focused on the perspectives of mothers supporting children through complex epilepsy diagnoses.
The undeniable power of the three mothers that spoke on our stage this year, was something felt throughout the room. Nicole Ronson Allalouf opened the final discussion speaking about navigating her daughter Lucy’s care over the past 19-years, touching on the repeated misunderstandings at school and in the healthcare system.
Clare Scheckter reflected on her daughter Ila’s diagnosis and experiences managing the severe anxiety bought on by her seizures and the lack of information around anti-seizure medications for those living with addiction issues.
We closed Hear Her Voice 2026 listening to the inspirational voice of Emma O’Brien, mother of Leo and founder of Leo’s Angels. Emma spoke about watching her son deteriorate with lack of support at school, and increased seizure frequency, while also highlighting the difference more joined up care could have made to Leo’s journey.
What our hosts & speakers told us
Host Ellie Henry reflected afterwards: “Thank you so much for trusting me with such a large event… it’s an honour to have grown up alongside the charity and see the impact reaching even further.”
Elina summed up the atmosphere simply:
I absolutely loved it. So inspiring.
Olivia shared: “It felt extremely special and it was wonderful to see everyone at YE again.”
Emma later reflected: “I was blown away… please do not underestimate the power of the platform you have created here.”
Jennie added: “If there’s a way to do more of these events, I’d love to… it’s such a special room.”
What our guests told us
Again and again, feedback highlighted the special atmosphere in the room - warm, thoughtful, and deeply inclusive. Our guests praised the sensitivity of the panels, the bravery of the women and girls who spoke, and the attention to detail that made them feel valued:
“Truly lifechanging for my daughter… it opened a new door for her.”
“That was genuinely one of the best events I’ve ever been to… absolutely amazing. I respect the work so much.”
“It was truly an emotional experience… a roller coaster ride of emotions but incredibly powerful and uplifting. I’m proud of the mums for telling their stories - it took great courage.”
Thank you for an excellent event.
“Another really powerful, valuable and successful event… not a dry eye at times! My colleague was really blown away - it helped her understand so much more about epilepsy and the support needed.”
“It was truly an emotional experience… a roller coaster ride of emotions but incredibly powerful and uplifting. I’m proud of the mums for telling their stories - it took great courage.”
“It was emotional, but healing and positive for both of us… The presenters made us feel included, and speaking with them meant so much to Edie.”
