Headlines E-News No. 10 – March 2018
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Headlines Conference and Information Day
Saturday 16 June 2018


Due to the adverse weather conditions and continued weather warnings, it was with much regret that the Headlines Conference, due to take place at Sheffield Hallam University on Saturday 3 March, was cancelled.

We are pleased to announce that registration is now open for the rescheduled Headlines Conference and Information Day.

We have a wide range of speakers coming from the highly specialised craniofacial units. The conference and information day will give patients and carers the opportunity to listen to, and meet with health professionals involved in the care of children and young adults with craniosynostosis. There will be plenty of opportunities to ask the speakers questions and to chat with other patients and families to share experiences and offer support.

Please book now as we are anticipating a high level of interest in this event. Places are limited and will be offered on a first come, first served basis.

We are extremely grateful for the generosity of Henry Boot PLC for their contribution towards the cost of the conference this year.

» Click here to view the conference programme and register

Come and join us for a family day out
Sunday 29 April 2018

Willows Activity Farm, London Colney, Hertfordshire

Willows Activity Farm is fun for all the family with plenty to see and do - farm animals to pet, a tractor ride, meet Peter Rabbit, outdoor adventure playground, indoor activity centre and sheep races - there is something for everyone. Here’s to a baa –rilliant day!

» To find out more click here


Invitation to all young members aged 13-25
Saturday 19 May 2018

Lunch meet-up and Science Museum, London


Join us for lunch and a trip to the Science Museum on Saturday 19 May for our first Young Persons event. (Change of plan due to the previously advertised event being undersubscribed, but not limiting a fun filled day).

Please note: those under 18 must be accompanied by an adult.
Carers are welcome.

» To find out more and to sign-up, please click here

The Gil Ruff Young Ambassador’s Award
We are inviting applications for The Gil Ruff Young Ambassador’s Award. The award is presented to a person under 18 who has shown determination in raising awareness of craniosynostosis and rare craniofacial conditions, and/or raised a substantial amount of money for Headlines through a fundraising activity. Applications will be jointly judged by a Trustee of Headlines and Gil Ruff’s family.

The winner will receive a plaque and gift voucher.

The award will be presented at the Headlines AGM which will be held at Windmill Farm Conference Centre, Clanfield, Oxfordshire
on Saturday 22 September 2018.

Please email applications or nominations to with name, age, up to 200 words about what I did for Headlines and, if applicable, how much money did I raise.
Family Weekend - Bookings opening soon!
FRIDAY 21 – SUNDAY 23 SEPTEMBER 2018      

Windmill Farm Conference Centre / Adventure Plus
Main Street, Clanfield, Oxfordshire, OX18 2SN /

We are busy planning the annual Family Weekend and bookings are opening soon. Please check our website, emails and social media channels for more information and updates.

We will have exclusive use of Windmill Farm for the whole weekend. Adventure Plus will provide a range of outdoor activities including canoeing, archery, bushcraft, and team-building challenges. The package includes full board accommodation, outdoor activities, campfire and evening entertainment, and childcare for the younger children. The Headlines Annual General Meeting will also be held during the weekend.

We hope you can join us for a weekend of fun, friendship and adventure!
Genetic Disorders UK – 2018 Leadership Symposium
Headlines were delighted to attend the recent 2018 UK Genetic Disorders Leadership Symposium in London. This is an annual event presented by Genetic Disorders UK in partnership with Global Genes.

Leaders from all UK-based genetic disorder charities and patient groups were welcome to attend the symposium. It offers a fantastic opportunity to listen to world leading genetic experts, to share experiences, strategies and to network with representatives from other rare disease groups. To find out more visit:

»  For further information click here.
Data Protection – GDPR
The personal data that members provide to Headlines is held securely by us, and we do not sell that information to third parties. Updated rules on data protection known as GDPR (General Data Protection Regulation) take effect from 25 May 2018.

Like all organisations, Headlines is working to ensure that we are in compliance with the new regulations and we will contact members as necessary.
Follow us on social media

We’re active on social media where we share relevant, interesting content as well as news of our activities and details of forthcoming events. Keep up-to-date with our latest posts and tweets and help us spread the important work we do here at Headlines to support all those with craniosynostosis and rare craniofacial conditions.

Join the conversation – find us on Facebook, Twitter and Instagram.
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.
Our next edition of Headlines E-News will be out in May. 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:
Copyright © 2018 Headlines, All rights reserved.

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