Thank you for visiting our page. Having been touched and incredibly grateful to all those who fundraise for Unique, many of them while caring for disabled children, Sarah (Unique’s CEO) and Craig (COO) decided that they also ought to do their bit. Rather rashly and possibly now regretting it, they are taking on the challenge of running (or stumbling round) this year’s Royal Parks Half Marathon. They’re raising funds for Unique’s Information Project, which helps families come to terms with their child’s diagnosis of a rare chromosome or gene disorder.

Before working for the charity, both Sarah and Craig had first-hand experience of how valuable this work is. Craig’s daughter Ella has a 6p25 deletion and he says:

“when Ella was diagnosed, the geneticist gave us a photocopied page from an old medical text book with a couple of sentences highlighted. She’d never come across the condition before so it was literally all the information she could find. We had loads of questions about the future but (through no fault of her own) she wasn’t really able to answer them. This only added to our distress and total confusion. Fortunately, she also told us about Unique and suddenly things
didn’t seem quite so bleak any more. We were able to get answers to lots of our questions, a better idea of what to expect in the future and had become part of a supportive, understanding community.”

Sarah was actually working as a geneticist in the lab when she received the news that her three miscarriages were almost certainly due to her husband’s balanced translocation. She says:  

“It was a huge shock. Unless you too a have had a balanced translocation diagnosed in your family, you probably won’t know that essentially it means that two pieces of chromosome (usually from different chromosomes) have ‘swapped places’. As no genetic material has been lost or gained, people who have them are usually unaffected, and often completely unaware until they try to have children when they have a high chance of miscarriage or the birth of a child with extra or missing chromosome material. The news came as such a shock and in our quest for more information we contacted Unique. Although a guide was not available then, I’m really pleased to say that there is one now! '

We would be massively grateful for any support you can give towards this crucial work, which funds raised here will be restricted to. Please note. neither Craig nor Sarah work in this area for Unique.