Chris and Fiona are proud parents to Leah and Lucas. Their first child Leah was born in 2006 and diagnosed in 2007 with Ks or 9q34.3 deletion syndrome (as it was known then). At the time it was thought that Leah was the 35th individual in the world to be identified with the syndrome. Both Chris and Fiona took to the internet in search of answers and at that time there was little information available, what they did find was difficult to understand and very negative. Chris works in ICT so it was a natural step to bring the small community of families together with our own website and members forum. Of course no one expected the community to grow so rapidly. Together with the support of the Ks.org team, Chris and Fiona have arranged family events and conferences to bring together families and professionals.
Karen joined the organisation when her daughter was diagnosed with Ks at 18 months old. She found the 2011 Ks families meet up and 2013 conference an invaluable way of meeting other families
affected by Ks and sharing information. Karen became Treasurer of the group in 2015 and is responsible for the day to day management of the group’s funds including the Ks Easyfundraising account.
Jane first heard of Kleefstra syndrome shortly before her daughter was diagnosed, aged 2, with an intragenic EHMT1 mutation in early 2015. Shortly after that, with a background in digital marketing Jane was happy to help when Kleefstrasyndrome.org first set up their Twitter account. She has progressively got more involved, passionate about helping to spread the word and support for people affected by Ks. Most recently, she has organised a meetup for families affected by Ks in Bournemouth in September 2016.
Page updated: 15-05-2017