Headlines E-News No. 13 – November 2018
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We would like introduce you to Karen Wilkinson-Bell
our first Charity Director who joined
Headlines Craniofacial Support on 1st November

Karen has over 25 years’ experience in senior roles in the charity sector, health and social housing, latterly as a specialist advisor and consultant. For almost 7 years, she headed up the regional arm of the Prince of Wales’s charity, Business in the Community, where she led a number of key regional and national campaigns, working alongside senior leaders from business, education, health, local government and the voluntary sector.

She has also had spells as CEO of a rural hospice service in North Yorkshire and Middlesbrough Football Club Foundation. Karen is a member of the Institute of Directors and is also a trustee of the Greggs’ Foundation.

Outside of work, Karen enjoys live music, cooking and park running. She is married with two daughters. She also has experience as a van driver from when she worked at the local hospice - which you never know may come in handy!

I feel incredibly privileged to have the opportunity of working with Headlines. The daughter of one of my close friends was born with non-syndromic craniosynostosis, and I recall how challenging it was for the whole family in those early years following her diagnosis. The work Headlines does to support families in similar circumstances is absolutely vital, and we need to do all we can to ensure that those affected by craniofacial conditions receive the care and support they need at every stage of their lives. I’m really looking forward to working with trustees and members on helping realise their ambitions for the charity over the next 5 years” says Karen.

Wendy Edwards, Chair and Diane Amey, Vice-Chair of Headlines say “we are delighted to welcome Karen to Headlines at a time where we have ambitions to grow as an organisation. We hope that with Karen’s wealth of experience we can increasingly raise awareness of craniosynostosis and rare craniofacial conditions, continue to support our members and ensure our long term sustainability as the sole UK charity to support these rare conditions.

Alongside the recruitment of our new Charity Director Karen, it’s been a busy two months for Headlines Craniofacial Support.

The Annual Family Weekend took place in September at Windmill Farm, Clanfield and despite the rain, the children enjoyed a range of activities including climbing, archery and fencing. The campfire took place inside as the weather was not kind to us but we still sang some rather crazy campfire songs and ate marshmallows too. The under 5’s were also well catered for as the play specialists from Oxford Craniofacial Unit provided lots of fun activities including wet play, forest school and cookie decoration. Adults were able to mingle and chat, and get to know each other over coffee whilst watching the activities or just relaxing on the sofas.

We are now planning for the 2019 Family Weekend so don’t forget to put the date in your diaries. It will take place on Friday 28th to Sunday 30th June 2019 at Pioneer Centre, Cleobury Mortimer, Kidderminster. Click here to take a look here at photos of the Pioneer Centre.

Activities will include high ropes, low ropes, mini assault course, caving, archery, raft building for over 6’s, and for 5’s and under forest activities, mini team games, crèche and inflatables.

We were sad to say a few goodbyes at our AGM in September 2018
including Justine Tweedie, who held the position of Group Administrator for two years. We thanked her for her hard work and commitment to Headlines and wished her well for the future. David Ellis, Nicola Crookes, Sue Greenwood and Helen Exton all stepped down as Trustees. We worked out that between them they had committed over 30 years of service to the charity for which we are sincerely grateful. We re-elected Wendy Edwards (Chair), Diane Amey (Vice-Chair), Donna Connett (Secretary) and Charles Edwards (Treasurer). We also formally welcomed new Trustees Caroline Hilton, Barry Fletcher and Pia Shaper.

We are always looking for new Trustees so do feel free to get in touch
if you would like to find out more.


We also asked members to agree to constitutional changes to our vision and mission at the AGM and are delighted to report that everyone was fully supportive of them.

Cranio Awareness Month & Jeans for Genes Day

We want to thank everyone who supported Cranio Awareness Month and our campaign highlighting our new vision and mission reached over 50,000 people on social media through the sharing of our Headlines Twibbon. We also raised some money through text donations. If you missed out on Cranio Awareness Month but would still like to donate to help us implement our new mission text HEAD04 £5 to 70070. Together we can make a difference!

We also thank those who joined in Jeans for Genes Day on 21st September 2018 and chose Headlines as a partner organisation. There are some great photos on our charity facebook page @headlinescraniofacialsupport of people taking part.

Headlines Wonderland Charity Ball and Auction
on Saturday 23rd March 2019

You hopefully will have already received our invitation to the Headlines Wonderland Charity Ball and Auction on Saturday 23rd March 2019. We will be raising funds to support the charity in the delivery of its new vision and mission.

Tickets are on sale now.
» Click here for full details.

As Christmas is looming please don’t forget to do your online shopping through Easyfundraising. Easyfundraising turns your everyday online shopping into free donations for your favourite cause. Easyfundraising works with other 3,500 online retailers such as Amazon, John Lewis, Sainsburys, Ebay, and many many more. Each time you shop online login via easyfundraising selecting Headlines as your cause, then each retailer you shop with will make a donation to Headlines every time you make a purchase. It’s that easy!

If you would prefer to make a regular donation to Headlines instead, we welcome any donations from £1 and upwards, please complete and return this form

Events Calendar:

Saturday 1 December 2018
Young Persons Event – Christmas Social, London

Saturday 23 March 2019
Charity Ball and Auction - Royal National Hotel, Bloomsbury, London

April 2019
Member Day Out – 100 Aker Wood & Aldenham Country Park, Elstree, Hertfordshire
April/May 2019
Charity Sky Dive Day
May 2019
Family Day Out – The Playbarn, Poringland, Norwich, Norfolk
Friday 28 to Sunday 30 June 2019
Family Weekend – Pioneer Centre, Cleobury Mortimer, Kidderminster

Saturday 29 June 2019
Annual General Meeting - Pioneer Centre, Cleobury Mortimer, Kidderminster

July 2019
Family Day Out – Canon Hall Farm, Barnsley, South Yorkshire

August/September 2019
Member Day Out – Moors Valley Country Park and Forest, Ringwood, Hampshire

September 2019
Cranio Awareness Month
22 September 2019
Jeans for Genes Day partnering with Headlines

If you would like further information on any of these events please email

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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.
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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