Mother and Daughter Flying High for Ring20

There might be many things on a young girls wish-list as she approaches her sixteenth birthday, but what Jacqueline Ball didn’t expect was for her daughter Sophie to say she wanted to jump out of a plane. This is exactly what Sophie wanted and her motivation was to show support for close

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A week in the life…

Many people ask me why I volunteer and why I do what I do. If I reflect on my answer to them it’s primarily because I enjoy my voluntary work and find it incredibly rewarding; there’s a lot of job satisfaction in helping another family by signposting them to information


Mental Health Awareness Week

When you meet Torie the first thing you notice is her sheer radiance and beaming smile. You cannot help but feel uplifted by her positive energy, but like many people who live with epilepsy, her smile gives no hint to the effects of her condition on her mental health. Torie


4th ERN conference, Brussels 21-22 Nov 2018

As part of my role as a European patient advocate for rare epilepsies, last month I was honoured to be invited to attend the 4th European Reference Networks Conference alongside several other representatives from EpiCARE ERN – the European Reference Network for rare and complex epilepsies. EpiCARE is one of


Patient Perspectives on Rare Disease

Glad Jackie and I made it to the The Rare Disease Day Event at Birmingham Children’s Hospital on 1st March 2018. Gosh it was cold! A great day which got cut short due to the weather. I met a young man who was studying Learning Difficulties at Stoke and told him

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