Sue stepped down as a Trustee in December 2022 after 13 years of commitment to the Ichthyosis Support Group (ISG) and its members. We would like to sincerely thank Sue for her support dedication and enthusiasm during her time with the ISG and wish her all best wishes for the future. 

I joined the ISG in 2009.

My husband (Andy) and I were out lunching with Maggie and her husband (Mike) in late spring that year. How do I know Maggie? We became firm friends while attending Langley Grammar School and remained so after she married Mike and moved away (I was lucky enough to be a bridesmaid to them). During the meal I asked Maggie about their daughter Mandy and also Maggie’s passion - the ISG. Maggie mentioned that the small charity was ticking along, always struggling with money and now also struggling with the lack of ‘somebody to take the minutes during Trustee meetings’.

We parted after lunch, but Maggie’s frustration at needing more support stayed with me. The previous year I had been rather poorly for a few months and Maggie was such a good friend at that time – visiting me in hospital at a time when many in my family couldn’t, and lending me her precious DVDs to watch while I tried to avoid boredom in isolation. So, now fully recovered and finding my way back into life, I decided that it was ‘time to give something back’. I was quite used to taking minutes of meetings as I had previously acted as secretary to our local Scout Group.

I offered my help to Maggie and, after she had asked the other Trustees for their approval, I attended my first Trustee meeting in August. At that meeting I discovered a small team of people who were absolutely committed to helping sufferers of ichthyosis and their families. I was hooked! How could I not be? All the people in that meeting either suffered the condition themselves, or were the parent of a child born with the condition. In time I heard their stories – all different - but all stories carrying the same message, that there is not enough awareness of ichthyosis. Every story told me that, at the birth of their child, nobody present recognized the condition and a very scary period in their lives began. All the stories are very moving.

So, years on, I still take the minutes – and Andy joins me attending all the Fun Days and Family Conferences where we welcome everyone as we man the reception process. We both love meeting up with, what have become, familiar faces from previous functions and greeting new attendees who quickly find themselves feeling welcome amongst other members of the ichthy family. Andy and I still believe that there is not enough awareness of the condition and will talk about it with friends and family at every given opportunity and help to promote the mission of the ISG whenever possible.