My daughter Mandy (please refer to her profile) was born in 1976 in the Royal Berkshire Hospital. She was 5 and half weeks early and very poorly, and they whisked her off to intensive care without me even having a cuddle. My husband was unable to be with me at her birth, and I remember being asked if I was related to him – apparently she had a rare genetic skin condition, which they later advised me was ichthyosis. Everyone’s heard of eczema and psoriasis – but ichthyosis…………?
There was no internet, or access to much information back then, and there was still very little when 20 years later Prof John Harper invited ichthyosis families to a meeting at Great Ormond Street Hospital (GOSH) to discuss the possibility of setting up a support group. He had been asked by Pamelia Catlyn, a parent of a young boy with ichthyosis about being able to exchange information with other families. Mandy and I attended that first meeting, and in 1997 together with Pamelia we helped to found the Ichthyosis Support Group (ISG). We were just 6 families.
Duly elected Treasurer, I opened the ISG’s first bank account with a £50 cheque donated by Contact A Family www.cafamily.org.uk who had also provided us with invaluable advice and guidance on how to get the group started. I continued in the role until 2009, when my close friend Rex Codling (an experienced charity treasurer) took over the role for 4 years. Rex guided us through incorporation, and employing our first member of staff, however I was re-elected as the ISG’s Treasurer when Rex stood down early in 2013.
In addition to ‘keeping the books’, I initiated the first ISG conference, which was held at GOSH in 1999. These annual events have developed and grown over the years and our Medical Advisory Board has always supported us by providing talks and chairing workshops for our families. The event continues to be an eagerly awaited fixture on the ISG calendar attracting up to 70 families (300 individuals) each year.
The ISG has always been keen to develop relationships with other like-minded associations, and in 2010 we joined with other European counties to form the European Network for Ichthyosis (eni) and I was delighted to accept the position of President. This network has resulted in an invaluable exchange of information across the 12 European countries and in 2013 a first survey of Lamellar patients in Europe (and the US) was conducted. In 2015 Mandy Aldwin succeeded me as President of eni.
As Treasurer of the ISG I should emphasise that the charity is not government funded – it is reliant on fundraising and donations. Apart from the money raised, any fundraising demonstrates to would-be grant makers that we are not a charity that expects to be funded by grants, but that we and our supporters make every effort to raise funds on our own account. Please consider pledging a regular donation through our website or request a donation form by simply ringing our helpline 0845 6029202, and help us to improve the lives of all individuals and families affected by ichthyosis.
In the 2015 New Year’s Honours Maggie’s work for those affected by ichthyosis and genetic skin diseases was recognised when she was awarded with an MBE by her Majesty the Queen.