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Headlines E-News No. 15 – June 2019
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New funding for landmark study into psychological support needs

For new parents, a diagnosis of a craniofacial condition in their child can evoke feelings of shock, guilt, and grief, as well as concerns for their child’s future. Families must come to terms with their child’s condition, process a wealth of medical information, and make difficult decisions regarding surgical intervention.

As children grow older and enter school, parents are often worried about the possibility of teasing and bullying, as well as medical absences, speech, communication and educational difficulties.

However, until now, very little research has been conducted into the kind of support that is likely to be most beneficial to individuals with craniosynostosis and their families, so we’re really pleased to have been successful in securing funding from the
  VTCT Foundation for a major new study looking in to this.

Led by Dr Nicola Stock at the
Centre for Appearance Research, University of the West of England in Bristol, the study will examine the long term physical and psychological effects for individuals with both syndromic and non-syndromic craniosynostosis and make recommendations for future service delivery and development. The study is expected to start in July, and will run for 12 months. If you’d like to be involved or find out more, please contact info@headllines.org.uk


Join our campaign for
better awareness and diagnosis

 

Headlines Chair Wendy Edwards and our Charity Director Karen Wilkinson-Bell recently spoke at the NHS’s Annual Craniofacial National Audit meeting in Liverpool.


 
Prior to the meeting, we invited a number of members to send in their experiences of receiving a diagnosis for their or their child’s condition, and specifically asked whether they had encountered any delays or problems.
 
What emerged was an often disturbing picture, with many parents having had to battle to get to see a specialist, sometimes over several years.Some described having been dismissed as ‘neurotic’ or told they were ‘exaggerating’ by their GP, midwife or health visitor. There seemed to be a real lack of knowledge of craniosynostosis.
 
We shared these stories with NHS commissioners and the specialist multidisciplinary teams at the Liverpool meeting and challenged them to work with us.
 
As part of our new 5 year strategy, we’ve already pledged to improve awareness of craniosynostosis and rare craniofacial conditions amongst the public and amongst the wider health professional community, particularly those who work in midwifery andprimary care- the midwives,GPs and health visitors who are often the first people to whom parents turn to for help when they have concerns about their baby.
 

And this year, we’ll be using CranioAwareness Month in September to raise funds for our awareness programme – but we need your help.
 

Whether it’s our SkyDive on September 1st a sponsored running event, bake sales at work or school, or any crazy ideas, sign up to fundraise for Headlines!
 
And if you’re a
GP or health professional who’d like to help us in our campaign to raise awareness in primary care, we’d love to hear from you.

Contact Karen for further information


Are you looking for a part-time role where you can really make a difference?

COME AND WORK FOR HEADLINES!


Headlines is seeking an enthusiastic, self-motivated Administrator with proven event management, finance and IT/social media skills to support our Charity Director and trustees.

Working from home, but with occasional travel to meetings and events around the country, this is an exciting opportunity to help us achieve our ambitions for the future.

The post is offered at 14 hours a week, with some flexibility to cover events at weekends.

Salary will be up to £23k p.a. on a pro rata basis.

For a full Job Description/Person Specification, please email karenwilkinson-bell@headlines.org.uk

Could you do with some extra support?

Hannah’s Fund provides free psychotherapy sessions to any person with or affected by craniosynostosis who feels they need some support. The fund was set up by the Lindfield family in the memory of Hannah, a talented artist who suffered from Pfeiffer syndrome and sadly passed away in 2014 at the age of 23.

Further details of how to access the support are available via www.hannahlindfield.co.uk
 
Family Day Out - Cannon Hall Farm, Barnsley
Saturday 20th July 2019

Join us for the perfect family day out at the award-winning Cannon Hall Farm!

Kids will be in heaven as there’s something interesting and exciting around every corner. As well as the working farmyard, there are adventure playgrounds, a huge indoor play area and two restaurants. The farm’s innovative tube maze is the largest in Europe and popular with all age groups.

Weekend admission is just £9.95 per person (under 2s go FREE)
or £38 for a family of 4.


For further information on facilities and directions
on how to find Cannon Hall, click here.  

Contact Donna if you need any further information about the event.

 



Young Persons Network (age 16 to 28)
Sunday 21st July


Join us for lunch at ASK Italian, Gloucester Place, South Kensington at 12 noon followed by a visit to the Design Museum.

For further details and to book a place, contact us on info@headlines.org.uk

Adult Member Lunch
 
Are you an adult with craniosynostosis? Would you be interested in attending a lunch in London in the autumn?

Please email us via info@headlines.org.uk if you’d be interested.

Help us help you!

We want to find out what kind of support services YOU want from Headlines, but we need your help.

Click through to our short online survey here.

 The survey will take just a few minutes of your time, and all responses will remain completely confidential.


NOTICE OF AGM


The 2019 Annual General Meeting will be held at:

The Pioneer Centre, Cleobury Mortimer, Kidderminster, DY14 8JG
on Saturday 29th June 2019 at 2:00 pm

All members are welcome to attend.

If you wish to do so and are not already attending the Family Weekend,
please email karenwilkinson-bell@headlines.org.uk
by no later than 19th June

Data Protection
Thank you for signing up to receive our news. We've made updates to our Privacy Policy in line with the General Data Protection Regulation (GDPR). To read our updated Privacy Policy, please click here.

If you would rather not receive information from us, you can unsubscribe at any time by clicking the link below.
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.
Fundraising

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 - info@headlines.org.uk

 
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