SUDEP Action

Making every epilepsy death count
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Bereaved mum Rachel Shah appointed SUDEP Action Trustee

We are pleased to welcome Rachel Shah to the board of trustees.  Rachel’s appointment brings the number of SUDEP Action trustees to fourteen, of whom seven are bereaved by epilepsy. 

Rachel commented: “My youngest daughter, Emily, who only had four seizures, died aged 19 at Leeds University in 2012. My husband and I had no idea that Emily could die and had never heard of SUDEP. The shock and grief were overwhelming but we have found that supporting SUDEP Action has given us a positive focus for our grief. Our eldest daughter also benefitted hugely from the counselling she received from the charity. I firmly believe that had we been educated about SUDEP then Emily might be alive today.

Rachel brings wide experience to the role and expressed her excitement at being part of the team. 

My background as a Chartered Accountant and my various volunteering roles as secretary and treasurer for small societies will stand me in good stead for my trusteeship of SUDEP Action. These are exciting times for the charity as the medical profession and the wider world begin to listen and engage with both the charity’s message and it’s work and I am excited to be part of the team.

SUDEP Action Chair of Trustees Professor Stephen Brown welcomed Rachel’s appointment saying:  “On behalf of all the Trustees and staff, I am delighted to welcome Rachel Shah to the board of SUDEP Action. Her experience both in accountancy and the voluntary sector, and the fact that she is a bereaved parent, make Rachel invaluable to the charity.