InsuranceWith, supported by Genetic Alliance UK, have launched the Who Cares Award to give carers the opportunity to be recognised for all of their hard work. The awards will be based on nominations from the public or through dedicated charities of those people who support others, dedicate their lives or put their lives on hold to care for others. Candidates can be young or old, a professional nurse or a relative. You can nominate someone you know here.
The Northern Ireland Family Day will take place on Saturday 10th August at the Charelmount Arms Hotel in Armagh.
Join other SOFT UK families to chat, share experiences and bring the children along for the fun activities! There will also be some remembrance time for those families who wish to remember a loved one.
As always everyone is very welcome!
Refreshments will be provided.
For more information and booking, please contact email@example.com
Joanne Fullerton, a Trainee Clinical Psychologist with Bangor University is completing a study investigating the experiences of siblings of children with life limiting conditions. She is looking for volunteers to take part. The aim of the study is to better understand the experiences of this group of siblings. If you are the parent of a sibling aged between 3 and 16 years, and you and your sibling child wish to take part, simply email her on firstname.lastname@example.org or contact her via telephone on 07957 620608
Our colleagues at SOFT USA have just launched their new website. It has a fantastic new look at contains lots of resources for families and also professionals. There is a comprehensive research section, providing all the details of the latest research on Trisomies and related issues. There are some beautiful family stories and videos and links to all their support materials. The site also has a foreign language translation function for those who first language is not english.
SOFT US have worked in partnership with us for many years and have kindly given us permission to feature their content on our own site, making sure that all families have access to the information that they need.
So head on over and have a look at www.trisomy.org
The CEN have published their results on their work improving support for families in Scotland of children who are tube fed. The full report is available here. http://www.cen.scot.nhs.uk/files/Emotional_Impact_Evaluation_Jan13.pdf
On 13th December 2012, there was a debate on Edwards’ Syndrome in the Scottish Parliament. This debate took place because of a little girl called Caoimhe and her parents’ efforts to set up a trust in her name to promote awareness of Edwards’ Syndrome. The key points of the motion, raised by Richard Baker MSP, were to ask for recognition of the support needs of families who have children with Edwards’ Syndrome.
Demi Powell and Laura Petrie, SOFT Trustees, attended Parliament on the day to hear Elaine Murray MSP speak on our behalf. Elaine put forward SOFT UK’s statement providing up-to-date statistics on Edwards’ Syndrome and outlining the variety of circumstances and support needs that families have. SOFT UK were also recognised for their long-term support of parents by a number of other MSP’s during the debate, which was truly heartwarming to hear such recognition.
The Minister for Public Health, Michael Matheson, responded to the concerns raised. He referred to the work being done by FASP in England, with which SOFT UK is highly involved, which aims to improve and standardise prenatal screening for T18 (and T13). He also referred to core funding given to SANDS to support families experiencing pregnancy or infant loss. He then went on to discuss the various palliative care initiatives discussed above and the “Shaping Bereavement Care” NHS programme that was rolled out in 2011.
It was a very interesting debate and wonderful to see Edwards’ Syndrome discussed at the highest levels. It does seem promising that there are so many health initiatives relevant to the care of our families, however the proof will be in the implementation. The full transcript of the debate can be found here.
One of our SOFT members, Heidi Bennett, creates beautiful memorial typographic images that you can have printed out onto card, canvas or any other materials. These can be personalised with the details of your precious little one, or with your whole family's details like the examples below.
Heidi has kindly offered to do these for SOFT members as a fundraising activity for SOFT UK, in memory of her daughter Isabella who had T13. She is asking for a donation of a minimum of £10, with all monies going to SOFT UK.
Full details of how to order are over on her VirginMoneyGiving page.
On the 19th September 2012, the Insight team at Everything Everywhere undertook a gigantic fundraiser for SOFT UK, in memory of Ethan who had Trisomy 13. The challenge was to use trains, cars, the odd pushbike and feet to get around each of the 700 stores in the Everything Everywhere estate over the course of 24 hours. They went to all four corners of the country, with the most northerly point being Elgin in Scotland and the most southerly Penzance in Cornwall and a lot of stores in-between!
The total fundraising achieved was a fantastic £26,505 for SOFT UK. This is an absolutely gigantic amount of money for a small charity like us, in fact its more than our average annual income. This gives SOFT an amazing opportunity to undertake some really important development work and we cannot thank Anna Tozer and the Insight team enough.
The official fundraising movie can be viewed here.
The 2013 Family Day will take place in the Village Hotel, Solihull on Saturday 29th June.
As always there will be a chance to share your experiences with other SOFT UK families, with plenty of time to meet and chat with others. There will be professional speakers, talking about their work in the Trisomy field. There will also be remembrance spaces and activities, for those families who wish to remember a loved one.