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Transcript of Edition 6 : Winter 2012 YGNET - wired.me.uk · PDF fileEdition 6 : Winter 2012 CONTENTS ......

  • YGNET The Newsletter of SWAN UK

    If you are interested in becoming a member of SWAN UK contact Lauren on 0207 704 3141 [email protected] www.undiagnosed.org.uk Facebook.com/SWANchildrenUK Twitter.com/SWAN_UK

    Life Without A Diagnosis

    Edition 6 : Winter 2012


    2 SWAN UK update.

    3 Beatrice Rogers.

    4/5 Camp Amazing. GenRes Genetic Forum. Day in the Life as a DDD Research Nurse. Life as a GenRes Nurse.



    Scotts Story.

    Matildas Story.

    9 Fundraising News

    10 New Sibs website for younger siblings. SWAN SIBS.

    11 13th April 2013, Undiagnosed Childrens Awareness Day.

    12 Glossary.

    SWAN UK is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. Registered charity (numbers 1114195 SC039299) A company limited by guarantee 05772999

    mailto:[email protected]://www.facebook.com/SWANchildrenUKhttp://www.Twitter.com/SWAN_UK

  • SYGNET : The Newsletter of SWAN UK : Winter 2012 SYGNET : The Newsletter of SWAN UK : Winter 2012

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    You may remember that over the summer last year Waterbabies in Oxford raised over 6000 in aid of SWAN UK. We decided that we would put this money to good use in the form of grants for families to hold events in their local areas. We are delighted to report that two events have already taken place one in Northern Ireland and one in Bristol. The feedback and the photos suggest that everyone had a brilliant time and we cant wait to see more events taking place in the New Year. Over the last month or so we have been busy getting the new website ready to go live. The most exciting part for us is our new members only area complete with its own mini social forum! We hope that this will help facilitate even more contact between members and the

    SWAN UK (Syndromes without a Name) is a project run by Genetic Alliance UK offering information and support to families of children w i t h und iagnosed gene t i c conditions. We aim to develop a community of families for mutual support who can work together to raise awareness of the issues they face. If you or any other families you know could benefit from support from the SWAN UK community please encourage them to get in touch on 020 7704 3141 or [email protected]

    Lauren, the SWAN UK Coordinator was very excited in October last year when she was invited to the Netbuddy reception at Downing Street. Hosted by Samantha Cameron, this was a fantastic opportunity to celebrate the joint working between Netbuddy and SWAN UK, promote the work of SWAN UK and of course, have a photo shoot on the famous door step!

    Lauren, the SWAN UK Coordinator at 10 Downing Street.

    more traditional thread forum will assist you to share information in an easy way. You can find t h e w e b s i t e a t www.undiagnosed.org.uk To celebrate the launch of the new website and to tie in with the Undiagnosed Childrens Awareness Day celebrations on 13th April 2013(see page 11) we are also going to be

    hosting our very own SWAN UK Single Post Blog Awards (also known as The SWANS). The aim of the awards is to celebrate the diverse and creative blogging community that brings people together from al l backgrounds to share their stories. You can find out more about how to enter the awards, or how to support your favourite blogger, by visiting www.undiagnosed.org.uk Please note that this newsletter is for information purposes only. All information is correct to the best of our knowledge at the time of going to print. Any organisations or products included here does not imply that they are

    recommended by or endorsed by Genetic Alliance UK or SWAN UK.

    About SWAN UK

    South west families Xmas party

    SWAN UK Update

    Northern Ireland families party.

    mailto:[email protected]://www.undiagnosed.org.ukhttp://www.undiagnosed.org.uk

  • SYGNET : The Newsletter of SWAN UK : Winter 2012 SYGNET : The Newsletter of SWAN UK : Winter 2012

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    This edition of The Sygnet is dedicated to the memory of Beatrice Rogers. The doctors were so bleak when Beatrice was born. As well as giving us a very poor prognosis, they seemed to write her life off as one big error. They struggled to see the baby underneath all the labels and disabilities.

    Therefore, in response to this, my mantra for Beatrice's life was, 'A life filled with love is a life worth living.' I didn't care what she was capable of doing, as long as she was pain-free and lived a life of kisses, cuddles and lullabies. I know I achieved that for her, right to the end.

    I think that applies to all the little SWANs out there. None of us know what the future holds, so let's live every day to the best of their abilities and just give them love, love and more love. Elizabeth Rogers, Beatrices Mum.

  • SYGNET : The Newsletter of SWAN UK : Winter 2012 SYGNET : The Newsletter of SWAN UK : Winter 2012

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    What is it? Camp Amazing is a camping event for children with complex medical needs or SEN and their families. Children with complex needs and their families deserve the chance to build memories and participate in every day activities. Camp Amazing strives to provide an opportunity whereby memories can be made and friendships formed. They believe that many fragile hands can build a lot of strength and therefore bringing these families together will make everyone stronger. Entertainment. There will be bouncy castles, face painting, craft tents, discos, group games, sensory play, night walks, mad hatters tea party, dressing up and much more. Camp Amazing Aim. To provide a fun filled camping event for children with complex needs and their families and to offer a support network for the family as a whole.

    The idea of Camp Amazing came from Claire, a mother of five children. Her youngest, Tommy, was born in August 2009 and suffers from a rare genetic disorder and there is no name for his condition. Until she had Tommy, Claire was not aware of the impact such conditions can have on family life. especially the siblings. Part of Tommys illness is a heart condition which can potentially limit his life span. Claire wants to do everything she can to make his life, as well as his brothers and sisters lives, full of special memories to be cherished forever. Camp Amazing was created in June 2012. Its a non-profit organisation and is run by a team of three, Claire, Hannah and Karina. They decided that a great

    way of cherishing memories would be to set up a camping event especially for children with complex needs and their families. They feel strongly that the benefit of giving these children a few fun packed days away, whilst giving parents the opportunity to meet other families who understand the challenges they face on a daily basis, is a fantastic opportunity for all the families concerned. Organiser Claire says: I am a mum of a child with complex medical needs myself so I know how hard going to events like this can be. Thats why Ive planned this event, so we can all support each other.

    Food. The camping event will include free breakfast consisting of cereals and toast and will have catering companies available to supply food throughout the event. Cost. 50 for the whole family, for more info contact Claire on 01202 668490 [email protected]

    When SWANs swim together, Their beauty and grace shine through, Unique, special kids. By Keith Addison


    The NIHR Genetics Specialty Group, which is part of the research arm of the NHS known as the NIHR (National Institute for Heath Research) identified that Genetics Research Nurses, Counsellors and Coordinators are pivotal in recruiting families to take part in genetic research studies They can however, often feel quite isolated working in the Regional Genetics Centres across the UK with little support.

    As many of the issues they faced are often the same, the GenRes: the Genetics Forum was established to support them to share good practice and increase the number of families recruited to take part in research studies.

    The GenRes Forum holds an annual study day for the GenRes group where they hear about current research, discuss best practice and have the opportunity to network. This June at the GenRes study day, a group of SWAN UK parents came and talked about Families experiences of talking part in genetic research, led by the SWAN UK Coordinator, Lauren Roberts. It was a very enjoyable and thought provoking session.

    Camp Amazing

    A SWAN Haiku

    mailto:[email protected]

  • SYGNET : The Newsletter of SWAN UK : Winter 2012 SYGNET : The Newsletter of SWAN UK : Winter 2012

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    Hi, Im Gill. One of the main projects that I work on is Dec ipher ing Developmental Disorders (DDD) study. When I started last year I was very keen to help families and support them with their involvement in research. I have been honoured to meet some of our families involved in DDD. Here is a slice of my day working on DDD:

    I call families and discuss the consent forms. I will ask them if they have any questions about DDD and discuss the research project aims and expectations. Then I ask Mum or Dad how their son or daughter are doing. I hear the most inspiring, courageous and heart warm