Headlines E-News No. 16 – Oct 2019
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A huge thanks to everyone who wrote to their MP asking them to support our new campaign to raise awareness of craniosynostosis in Parliament. Those of you who did will know that the aim of the I’m#CranioAware campaign is to build a community of support amongst MPs and policymakers, and get issues relating to craniosynostosis and rare craniofacial conditions raised in Parliament.

So far over a dozen MPs across all 3 main parties have expressed an interest in supporting the campaign, and we are currently drafting a list of written questions for them to submit after the conference recess. We are also looking to draw on their support for the creation of an All Party Parliamentary Group (APPG) on Craniosynostosis and Rare Craniofacial Conditions, although the likelihood of a general election in the next few months means that we will probably need to wait until next year to move this forward.

Our thanks, too, to Young Person’s Network members Laura Melles, Charlotte Ashby and Mitch Camp who joined us to launch the campaign in Westminster on 4th September. Despite the tumult both inside and outside Parliament that day, we were fortunate to meet with a number of MPs who were keen to support our work.

The sky really was the limit for 15 members on 1st September, as they donned parachutes and leapt out of a plane at 10,000 feet above Wiltshire to raise funds for Headlines. Organised to coincide with the launch of CranioAwareness Month, the jump was the brainchild of our chair, Wendy Edwards, who also took part, along with her husband (and Headlines treasurer) Charles.

In total, the group raised over £17,000 for the charity.


After a rigorous recruitment process, Donna Connett was appointed to the role of Headlines Administrator at the beginning of September. Many of you will already know Donna as one of our trustees and as mum to 6 year old Lewis, who has Apert syndrome. Donna will be working with us for 14 hours a week.


Several of our members were featured in this year’s Jeans for Genes Day campaign in September, and we received some great press coverage, including an article in the Yorkshire Post about Donna and her family, which you can read here.

As part of our wider campaign to raise awareness amongst health professionals, our Chair, Charity Director and Administrator attended the annual Royal College of Midwives Conference in Manchester on 24/25 September. Over the 2 days, the team met or spoke to more than 100 students, midwives and health educators, all of whom were keen to find out more. Only a handful had ever heard of craniosynostosis, confirming our belief that there is more to be done to help midwives recognise what to look out for. We are now looking at developing materials to assist with early diagnosis, particularly for the non syndromic conditions, which are usually less obvious at birth. We are also exploring how we might develop and deliver a presentation for midwifery degree courses around the country.

Following an extensive feedback process, including detailed input from experts in the Highly Specialised Craniofacial Centres and from our Reader Panel, we’ve now completed the first stage of work on our new patient information leaflets. A new-look format has been finalised, and content for the first two leaflets drafted – we’ll keep you posted as the leaflets are rolled out. In the meantime, we have removed a number of the old leaflets from our website as some of the information was out of date.

We welcomed over 100 people to the Pioneer Centre on the edge of the Wyre Forest for our annual Family Weekend at the end of June. For once, the sun shone, and from the high wire to the raft building, great fun was had by all!

We’re currently looking at options for 2020 and hope to be in a position to confirm a venue in time to start advertising places before the end of the year.


22 members joined us in London on the 7th September for the Stakeholder Workshop to launch our new UWE-led research project addressing two of Headlines’ research priorities, namely “What are the long-term physical and psychological effects for individuals with syndromic and non-syndromic craniosynostosis?” and “Are individuals with craniosynostosis likely to suffer from mental health difficulties, or are they more resilient?”

The aim of the workshop was to finalise the design of the online survey, which will be rolled out later this month, subject to ethics approval. We hope as many members as possible will take part in the survey, which is the very first of its kind specifically for those affected by craniosynostosis.

Please keep an eye out for the emailed survey in your inboxes.

Our Facebook and Twitter pages are becoming increasingly important for our campaigning work and for raising funds – and we need YOUR help to get as many people to like and share as possible. Please encourage friends and family to ‘Like’ and ‘Follow’ us!

Join the conversation – find us on Facebook, Twitter and Instagram.

Adult Member Lunch - Saturday 9th November from 12 noon
ASK Italian  Gloucester Arcade, Kensington,  London –
If you’re an adult with craniosynostosis join us for a get together over lunch in central London – for further details or to book a place, please email
Conference 2020 – Saturday March 21st
London  (Location TBC)
Further details to be announced shortly – please contact us to register your interest.
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Member stories - do you have a story to share?

Headlines is always looking to hear more about your experiences with craniosynostosis and craniofacial conditions. We are seeking member stories and photographs for inclusion in our e-newsletters, website and the next edition of Headline News. This might include a story relating to your experience, a fundraising activity or event, or a new parent support group.

Please contact Headlines if you are interested in writing something or would like help from us to build the story with you.

» Click here to read some of our member stories.

Are you interested in raising money to support Headlines?

Why not hold a cake sale at school or at your office – we can send you posters to help advertise your idea.

»  Click here for more information

Headlines is entirely funded by kind donations from its members and their friends and families, with additional ad-hoc support from companies, and other charitable trusts and foundations. Many of our members have been busy fundraising and donating to Headlines over the last few months.

You can read some of these stories via the Headlines Just Giving page.

Please let us know your fundraising stories for future newsletters.
Please send your articles and photographs to us. We would love to hear about your experiences, fundraising events, or meet-up announcements.

If you have ideas for other information you would like to see included here, then please let us know -

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