image001From about a week after my son Daniel was born, the Ichthyosis Support Group has played a major part in our lives.

Daniel was born a collodion baby in a hospital where very few of the medical staff had any knowledge of ichthyosis. Most of them had never seen a case before, relying on virtually no information at the beginning of his treatment. This left our family in the dark. When all of our googling eventually led us to the ISG, it was like someone flicked a switch and jacked up the floodlights! Suddenly with so much more information at our fingertips we were able to form educated opinions, or seek out more information from people with first hand experience.

That’s why the ISG is so important to me, and my family.

We started a justgiving page for the ISG in Daniel’s name very early on. It meant that we had a place to direct all of the very kind people who wanted to help us.

Since then as a family we’ve held 2 charity dances, participated in the Ichthycyclotron 2 years running, and held smaller fundraising events at work, schools and nursery! The local pubs have ISG collection boxes on the bar, and have on more than one occasion donated the proceeds of their own events to the ISG.

We’ve raised several thousand pounds total, for the wonderful work the ISG do. Events, information and research are so important – we won’t stop there!