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Research Opportunity at Belfast Conference - Can you help?

Researchers at the Cerebra Centre for Neurodevelopmental Disorders, Coventry University and more recently Aston University have focused on investigating emotion, such as anxiety, and behaviour in individuals with Cornelia de Lange syndrome (CdLS). They are now extending their work on anxiety and to include new factors that may lead to anxiety in CdLS. They are interested in understanding these factors and believe getting input from individuals with Cornelia de Lange syndrome and their parents/carers is the best way to do this. For example, they are interested in how people with CdLS make sense of uncertain situations. The researchers will be attending the Spring 2019 conference in Northern Ireland and will have many opportunities for families to get involved in research. From small focus groups, to questionnaires, to individuals with CdLS completing some fun tasks with the researchers! You can take part in something quick (30 minutes at the conference) or join one of the more detailed research studies. There will be opportunities for families of people with CdLS of all ages and abilities. If you and/or your child/the person you care for is interested in getting involved, you can email Dr Jane Waite to register your interest: j.waite@aston.ac.uk

 

Download the information flyer here


Survey Results Overview

We ran the Survey Monkey poll of how we are doing as a support group. It is very gratifying to report that there was a good response to this. We would like to disseminate a summary of the findings revealed by the answers you gave us. Before we get into it, we would like to thank all those who responded. Your responses, opinions and comments help us enormously in shaping the Foundation of the future.

We asked: If the services we provide meet the needs of your family
You said: “They do” with an average of 3.8 on a scale 1-5. The highest percentage (36%) gave the strongest “agree” rating of 5, with a 4 rating second at 30%
We will: Continue to speak to you all to see how we can improve this

We asked: If conferences are useful and informative
You said: Nearly 50% of you strongly agreed that they are, with only 4% disagreeing
We will: Continually look at the weekend format for improvements

We asked: How often do you attend conferences?
You said: 36% said when in your local area, 25% every few years. 10% have never attended
We will: Fine tune the rotation of areas to try and increase frequency for each area. Interestingly, we reviewed where conference delegates come from and found that actually, a lot of people will travel outside their local area

We asked: What are the most important facilities we offer at conference?
You said: Far and away, the most important were, Doctor Consults, Doctor Presentations, Workshops, Childcare, Socialising and the Cost of the weekends. It was also very clear that everything – and every delegate being all in the same venue is paramount
We will: Revise our criteria in searching for suitable hotels, think outside the box on catering, treat aspects like spa facilities, location and proximity to airports as less important which we hope will broaden our choices

We asked: Your preferred means of getting information
You said: 86% of you specified our website with our magazine Reaching Out close behind. The Facebook page was a strong third. Of course, the Office was named strongly
We will: We are already embarked on a revamp of the website but this will be a long term project. The new Treatment Guidelines are something that will probably appear before any redesign/restructure but they are coming

Other questions about contacting us, paying a conference registration fee and how much showed that there are no problems in these areas. Almost unanimous in reaching us easily and happy to pay at the level we have pretty much already set. The questions that required specific comments were not, by and large, responded to anything like as much. What comments we received were virtually all positive.

Our thanks go to all who took part. This feedback is very useful in helping to shape the Foundation of the future.

Could you be a Trustee for the Foundation?

We have a number of vacancies on the CdLS Foundation UK & Ireland board of Trustees. We are looking to recruit, in line with our policy, three individuals who can add the required skills to the board.
They are voluntary positions but reasonable out of pocket expenses will be paid, travel and accommodation being the main ones. The areas of expertise we would like to find people for are:

  • Social Media skills
  • Accountancy/general financial skills
  • Knowledge/understanding of Ireland’s specific social welfare and health systems

Trustees are responsible for the good governance and financial health of a charity. You would be required to attend a maximum of 2 board meetings per year outside of conferences – Skype is possible but face to face preferred. We do also meet while altogether at conference and it is preferred that trustees attend to help with the running of the weekend. In addition, we have conference calls at the end of each month. In helping to run the Foundation, you may be required to take on a specific role or area of responsibility.
If you feel you could add your expertise to the board of trustees, please read our Trustee Recruitment Policy and download an application form from www.cdls.org.uk/about-the-foundation/our-policies/

Email applications only to chairman@cdls.org.uk

T-Shirts Available to Order

We are pleased to announce that we have a wonderful supplier lined up to take your orders. Matt Baker (husband of our North of England Regional Volunteer, Andrea Baker) can supply t-shirts to order. Options pictured here. All options can be personalised. Hover over the pics for the description. Click the link to place an order.

https://www.facebook.com/BsClothingVinylAndDecals/

For those of you not on Facebook, you can email bsvinyl5@gmail.com

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Kids Light Shirt Design 1
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