Headlines E-News No. 6 – March 2017

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Headline News – Meet the team!

Dr.David Ellis was born in Devon, but spent much of his early life in North Yorkshire. He currently lives in South Wales. He worked for 37 years in education as a teacher and headteacher in various parts of England before moving to the USA, where he completed his Ph.D. at the Ohio State University. On his return to the UK, he worked in higher education, finally as Dean of Education at Cardiff Metropolitan University. He officially retired in 2006, but still works freelance as a school inspector across Wales. His daughter, who is now at university, was born with single suture craniosynostosis and has had four major skull reconstructions at the John Radcliffe Hospital in Oxford. David’s trustee role focuses mainly on governance and policy development


Address: Mount Cook Adventure Centre, Near The National Stone Centre, Porter Lane, Middleton-by-Wirksworth, Matlock, Derbyshire, DE4 4LS

Not booked yet? Come and join us for a great family weekend!
Thank you to everyone who has booked for this year’s Family Weekend. If you haven’t already booked but are interested in attending, we do have some availability. Please see the website for further info and booking. Please send the booking form and deposit urgently to ensure your place is reserved as places are only available on a first come basis on receipt of these.

We have exclusive use of the venue - a brand new not-for-profit Adventure Centre, based on the outskirts of the Peak District - for the whole weekend. The weekend gives families the opportunity to get together to share advice and support, to make new friends and have fun! Children (aged 6 +) will take part in activities in small groups led by qualified instructors. The activities can be differentiated to cater for all abilities and skills and may include: Archery, High-Ropes, Team Challenges, Fossil Hunting & Gem-Panning, Exploration Walks and Orienteering, Water Sports, Caving, Rock-Climbing & Abseiling, Bush Craft & Den-Building.

A team of Play Specialists from Oxford Children’s Hospital will be there to provide clubs for the younger children (aged 0-5). The clubs will provide a range of fun and interactive activities, including arts, crafts and games. The children may also be able to take part in Fossil Hunting & Gem-Panning and enjoy outdoor games and walks.

We hope you can join us for an informal weekend of outdoor activities and adventure.

Teenage & Young Person Provision

As part of our initiative to provide more support to older children and young adults living with Craniosynostosis and related conditions, we have now added lots of information and useful links to our website. We have included information on employment, confidence and self-esteem, and how to get help or support. Read our inspiring guest blog by Daniella Reynard and read all about Mitch Camp and his involvement with the Special Olympics.

LifeSkills, created with Barclays, has offered to hold a training day for any young people who wish to develop employment and confidence building for interviews. Please contact Headlines for more information.

Headlines' First Annual Conference

Thank you to all that took part in Headlines' first annual conference at King's College in London. We had contributions from surgeons, psychologists, ophthalmology, Speech and Language and CNS from GOSH and Oxford Hospitals plus from Hannah's Fund, a parent perspective and more. Andrew Wilkie's genetic talk was fascinating as always. Thanks to all that came to listen. Special thanks to Wendy Edwards, Helen Exton and Justine Tweedie for all their hard work in putting it together. We hope to run it again in a northern location in 2018.

Laura Sutton - Chair of Trustees, Headlines Craniofacial Support UK.

Getting Involved in Face Equality Day

The first national Face Equality Day in the UK will take place on Friday 26 May 2017. Changing Faces is calling on individuals, support groups and organisations to support their vision of a society where all individuals with disfigurements are treated fairly, equally and with respect irrespective of their appearance. They aim to remove the stigma, prejudice and discrimination that people face so they can have the same life choices and opportunities as everyone else and will be free to live life the way they want.

Face Equality Day will raise awareness of disfigurement and its impact on people’s daily lives and will promote the face equality campaign. Changing Faces have planned various activities including illuminating public buildings with their distinctive brand colours and logo, poster campaigns, publicising the results of the major new ‘Disfigurement in the UK’ report through media and social media coverage with individuals sharing their experiences and celebrities speaking out and wearing the Changing Faces butterfly to show their support. If you wish to support Face Equality Day you could wear the butterfly on the day and upload to social media, sign the Face Equality pledge and get involved at school, college and your workplace. More activities will be announced in the run up to Face Equality Day and there will be lots of ways you can show your support and get involved.

Read more:

Sign up today to say you are getting involved:
Member Stories

We are seeking member stories and photographs for inclusion in our e-newsletters, website and the 2017 edition of Headline News (the magazine will be published later this year).

As our members, we would value any copy you might wish to submit for inclusion, stories you think we should cover or events that you might want us to list. This might include a story relating to your experience, or simply a burning issue you feel needs covering (for example, a parent support group or a new initiative).

If you have any suggestions or would like more information regarding any of the above, please contact Justine Tweedie – to discuss your potential contribution further.

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 organisations.

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 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 do let us know. Please send articles, ideally with a photograph, to . Thank you!
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