My name is Liz and I am married to John.  We have two daughters, Ellamay born in 2004, who was born a collodion baby and has Non Bullous ichthyosis and Maisy born in 2010 and does not have ichthyosis.  Before joining the ISG I worked as a nurse, my background is in mental health nursing with a degree in psychology, and I was employed part time as the Administrator for the ISG in August 2009.

I became involved with the group following an appointment at Great Ormond Street Hospital when we stopped for lunch at Pizza Hut near the hospital.  Whist having lunch we met one of the then ISG Trustee’s, Clive and his family, there for the same reasons.  We were invited to join the conference and 10 year celebrations of the ISG in London 2007 and had a fantastic time.  Whilst there we met some wonderful people and felt everyone was very welcoming.  Lots of families had known each other for some years and there was certainly a feel of a community within.  I was touched by the people we met and the experiences shared and felt I wanted to do more to help.  I started fundraising and offering my assistance to the group. I began to realise the efforts of everyone involved in keeping the group together, and the fact that all were volunteers having to balance personal life, work and coping with the condition with putting in time to provide the support for the group and it’s members.  After some time I was asked if I would like to make my contribution more formal and was offered the role of the ‘ISG Administrator’ in 2009, in 2017 my role progressed to 'Office Manager.

My role is very varied and continually evolving and involves managing the day to day activities in the ISG office, based in Reading,  which we were lucky enough to move into in 2014 at no cost to the ISG. I am also involved in organising events, contacting and liaising with members, applying for grants, supporting fundraising, being at the end of the ISG phone line, attending meetings and conferences with various medical professionals and outside agencies, assisting with literature and updating existing paperwork, databases, and current systems and much, much more.  In 2014 we also established the ISG Residential camps for children affected by ichthyosis, which I run on a voluntary basis alongside Sarah Griffiths-Little, ISG Trustee.

I am thoroughly enjoying my role within the ISG and hope to stay for the duration.

If anyone has any suggestions or ideas or would like to contact me for any reason you can call the ISG phone line 0845 602 9202 or email me at [email protected]