Headlines - Craniofacial Support, is a registered charity run by volunteer Trustees, together with a part-time employee. Headlines began in 1993 and was set up by a group of parents of children with Craniosynostosis. The current Trustees continue to be mainly parents or close relations to children affected by Craniosynostosis. There is also one Trustee who is a medical professional directly involved in the care of patients diagnosed with conditions associated with craniosynostosis.Headlines' Mission is to:
- Help all those affected by Craniosynostosis and associated conditions throughout their lives, to achieve their potential and to meet their special challenges, by making readily available a comprehensive range of support services.
- Increase awareness of Craniosynostosis and its associated conditions amongst professionals and the general public so that all affected persons receive the appropriate treatment.
Headlines has a membership of approximately 500 families in the UK and overseas plus approximately 200 professionals involved in craniofacial care and support services.Members and non-members receive support through various means:
- Help Line
This is a direct line through to the experienced Headlines administrator, Gil Ruff (or her husband and Trustee, Eric), and is available to members and non-members alike. Gil helps many parents, particularly at the delicate time soon after diagnosis, to access immediate relevant information on their child's condition. She provides a friendly ear to both new parents and longer standing members as issues or concerns arise about their child's treatment (please note however that we are not qualified to comment or advise on questions of a medical nature). She also is able to put parents in touch with each other locally/regionally, so that they can gain from each other's experiences and their children can see they are not the only ones living with such conditions. Click here to view contact details for the help line.
- Headline News (members only)
This is our regular newsletter, which is posted to all members and includes real life articles from parents, carers, medics and children about their experiences and often amazing achievements, living with a craniofacial condition. It also contains details of upcoming events, photographs, tips, contact details and fundraising efforts. Back copies of Headline News from December 2010 will be posted in the Members' Area so that previous articles and stories are easily accessed.
- Events (members only)
Each year we hold the charity's main event The Family Weekend plus other regional or age specific events for members. The Family Weekend takes place in Spring and offers parents and carers informative workshops, the opportunity to meet medical and other professionals and a chance to chat with other families. It offers the children, those affected and their siblings the chance to socialise and have fun with each other in age specific activities. For more details on the Family Weekend and our other events please click here.
- Forum (members only)
Members are able to join the debate by registering for our forum hosted by this website. We encourage parents and carers to get involved in the discussion boards and topics of interest and to gain the benefit of others' experience, or simply to make friends. For privacy and safety reasons the forum is only available to adult members who have registered to participate and to view.
We have recently relaunched the website to make it more useful to all. We have an open access area which provides lots of information on the conditions supported by Headlines and links to the various specialist hospitals and to our Help Line. For our members we have the Forum, the Gallery, back copies of Headline News and useful links.
Headlines is entirely funded by charitable donations from its members, their friends and families and businesses which have kindly decided to support this cause. We use this funding to enable us to employ an administrator and to subsidise our members as much as possible for the cost of those events and activities we are unable to finance independently. We encourage you to get involved in fundraising as every penny helps - click here for further information.
If you would like to become a member, please sign up and we will send you a welcome pack along with your login details. To learn more about membership and to join please click here.