This year's charity, Headlines, is very close to the IAS
by: Ruth Tytherley
Throughout 2008 the IAS is be supporting Headlines - an extremely worthwhile charity which was set up in 1993 by a group of parents whose children were affected by Craniosynostosis.
Many of you will know Laura and Phil Sutton (Laura works for Savills and Phil is a shed developer at Kier). But not all of you will know that their 10 month old son Zack was born last summer with APERT SYNDROME which is a Cranial/Facial Disorder. Now Headlines is giving them real support and we want to in turn support Headlines so that Zack, his sister Anya and both Laura and Phil get all the help they can.
So what is Headlines all about I hear you ask?. Headlines is a registered charity run by voluntary trustees (who include medical professionals) together with a part-time employee.
At birth a baby's skull (cranium) is made up of several plates of bone that lie side by side, but are not actually joined. In normal circumstances, these plates expand and grow, allowing the baby's brain to grow inside the skull. Eventually, when the brain has finished growing in early adulthood, all the plates will join together (fuse) at their seams (sutures, growth lines) so that the skull becomes a fixed 'box' which protects the brain.
In Craniosynostosis, one or more of the sutures has fused too early - before birth or in early infancy, preventing the skull from growing normally which may cause damage to the eyes, ear nose and throat system, hearing and in some cases to the brain. In APERT SYNDROME, the child's fingers are also fused. Preventative and cosmetic surgery is the primary treatment, involving many operations until adolescence.
Headlines is working to increase awareness of Craniosynostosis and its associated conditions amongst medical professionals and the general public so that all affected persons receive the appropriate treatment.
Headlines aim is to help all those affected by Craniosynostosis and associated conditions throughout their lives, to achieve their potential and meet their special challenges, by making readily available a comprehensive range of support services.
Headlines publish newsletters and children's magazines during the year and have a library of leaflets, medical articles, videos and other resources.
For more information or to make a donation to this worthwhile charity, please contact Ruth Tytherley on 020 7182 2154 or have a look at the website www.headlines.org.uk