Headlines Craniofacial Support, is a registered charity run by volunteer Trustees, together with a part-time employee. Headlines was set up by a group of parents of children with Craniosynostosis in 1993, later becoming a registered charity in 1996. 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.Become a member
Headlines has over 1600 members made up of families, adults and health professionals in the UK and overseas.
This is a direct line through to a Headlines Trustee and is available to members and non-members alike. This is currently manned by long-standing Trustee Sue Greenwood, who is a retired Craniofacial Nurse Specialist having worked in this field for many years.
The telephone helpline helps many parents, particularly at the delicate time soon after diagnosis, to access immediate relevant information on their child's condition. It provides a friendly ear to both new parents and longer standing members as issues or concerns arise about their child's well-being and treatment. Please note however that Headlines is not qualified to comment or advise on questions of a medical nature.
We also 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 telephone helpline.
Our E-newsletter is sent out every two months and includes regular digital updates on our activities plus member stories and articles. A printed magazine “Headline News” is also produced once a year and 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.
Every year, Headlines members are invited to join us at our Family Weekend. The weekend takes place in Spring / Summer at an outdoor adventure centre and gives families the opportunity to get together to share advice and support, to make new friends and have fun taking part in different activities.
In February 2017, the first Headlines Conference was held at King's College London. The conference aimed to share knowledge and engage patients, carers and health professionals affected or involved in the care of children and young adults with Craniosynostosis. Following the success of this inaugural conference, a similar event is planned to be held in 2018.
Click the links for more details on the Family Weekend and our other events.
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. To learn more about membership and to join please click here.
Wendy Edwards - Chair (Parent of child with non-syndromic single suture craniosynostosis )
David Ellis - Secretary (Parent of child with non-syndromic single suture craniosynostosis - Saggital)
Charles Edwards - Treasurer (Parent of child with non-syndromic single suture craniosynostosis )
Sue Greenwood (Retired Craniofacial Clinical Nurse Specialist)
Helen Exton (Relative of child with syndromic craniofacial condition - Apert Syndrome)
Nicola Crookes (Parent of child with non-syndromic single suture craniosynostosis - Saggital)
Diane Amey (Parent of child with syndromic craniofacial condition - Apert Syndrome)
Donna Connett (Parent of a child with syndromic craniofacial condition - Apert Syndrome )
Alistair Marsden (Parent of a child with partial closure of his lambdoid and sagittal sutures)
The Headlines Family Weekend is our main event, which we host annually and generally runs from Saturday morning to Sunday lunch time.Please click here for more information.
Donations & Sponsorship
Headlines is almost entirely funded by donations. Continued financial support is essential to maintain the work of Headlines.Please click here to find out how you can help.