Headlines E-News No. 9 – January 2018
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Headlines Conference – Saturday 3 March 2018

We are pleased to announce that registration is now open
for the second Headlines Conference.

Hosted by Sheffield Hallam University
The conference aims to share knowledge and engage patients, carers and health professionals affected or involved in the care of children and young adults with Craniosynostosis.

Presenters will include surgeons, craniofacial nurse specialists, clinical and research psychologists, speech and language therapists, and clinical geneticists. There will be an opportunity to ask the speakers questions and hear from experts from different supra-regional craniofacial units. There will be breaks to meet with other patients and families to share experiences and offer support.

Tickets can be purchased at a cost of £6.
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.

View the conference programme and register

Issue 2 of Headline News is out now

Headline News magazine is one of the membership benefits of joining our charity. The magazine’s aim is to bring readers helpful information, interesting features, and all the latest news from Headlines. It contains medical and research articles, events information, member stories, and fundraising experiences.

Read all about Monty’s journey through craniofacial surgery, and an interview with father and son, Aaj and Dilen Chocken, whose story has a unique and touching twist. There is also feedback and photos from the Headlines Family Weekend and much more.

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

Please come and join young members at a social event in central London on Saturday 19 May! We are planning a lunch meet-up followed by a theatre show. This is a great opportunity to meet and socialise with other young members of Headlines.

We hope to hold regular social events for young people.
Get in touch to share your ideas for fun events.

To find out more and to sign-up, please contact us:

New for 2018 – Family Days Out

We have been listening to our members and are excited to launch a programme of Family Days Out across the country this year. It will be a great chance to meet people in your area and share your experiences in beautiful and fun locations of Hertfordshire, West Yorkshire, Dorset and the Midlands.

If you are interested in hosting a local get together please get in touch:
Penpal Wanted! 
Friends of Chernobyl’s Children (FOCC) is a charity working to support disadvantaged children and their families living in Belarus, one of the areas worst affected by the Chernobyl nuclear disaster in 1986. The charity funds and organises yearly visits for children to the UK, where they stay with host families for recuperative care.

The FOCC Mid-Sussex branch recently approached Headlines, as they have been helping a young mother who has a daughter with Apert Syndrome. The charity is hoping to bring Emilia and her mother over to the UK next summer. They have asked Headlines for help to put Emilia in touch with someone her own age who also has Apert Syndrome. Emilia is home-schooled and the family are feeling very isolated. It would be great to find a penpal for Emilia to give her someone to talk to via email and to help with learning English.

Please contact us if you can help –
Top Ten Research Questions


Update from the Cleft & Craniofacial Anomalies Clinical Studies Group

Following a long consultation with Headlines members and health professionals, the Top Ten Priority Research Questions in Craniosynostosis and other associated craniofacial conditions have now been identified.

Thank you to everyone who has helped to define these unanswered questions. Research requires funding, time, patients and patience but we hope to find ways to work in partnership with others to find the answers.

Further information and a full list of the questions can be found on the research page of the website.

Click here to read more about the CSG
FRIDAY 21 – SUNDAY 23 SEPTEMBER 2018      

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

We are delighted to announce that Headlines is returning to Windmill Farm, Oxfordshire to host the 2018 Family Weekend. Adventure Plus will once again provide a range of outdoor activities and team-building challenges. We will have exclusive use of the venue for the whole weekend. 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! 
Data Protection – GDPR
The information that you provide to Headlines is held securely by us, and we do not share or sell that information to third parties. In May 2018, the law will change when the General Data Protection Regulation (GDPR) comes into force. As a charity, we need to ensure that we only contact you with news and information if you have given permission. We will shortly be contacting all our members via email regarding their contact preferences.
Events Calendar:

Saturday 3 March 2018 - Headlines Conference - Sheffield Hallam University, Sheffield
Sunday 29 April 2018 - Family Day Out - Willows Activity Farm Day, London Colney, Hertfordshire
Saturday 19 May 2018 - Young Persons Event - venue to be confirmed, London
June 2018 - Family Day Out - Yorkshire Sculpture Park, Bretton Hall, Bretton, Wakefield
August 2018 - Family Day Out - Arne RSPB Nature Reserve, Wareham/Poole, Dorset
Friday 21 to Sunday 23 September 2018 - Family Weekend - Windmill Farm/Adventure Plus, Clanfield, Oxon
Saturday 22 September 2018 - Annual General Meeting - Windmill Farm/Adventure Plus, Clanfield, Oxon
October/November 2018 - Family Day Out - location to be confirmed, Midlands

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 March. 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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