The venue for the 20th SOFT UK Family Weekend May 8th-May 9th 2010 starts 9.30am
Please book your place(s) by returning your booking form to SOFT UK as soon as possible.
For the first time the annual SOFT gathering is being held over a weekend at the Northampton Hilton. It is SOFT's 20th Anniversary and we have an exciting programme planned. The speakers will be SOFT Medical Adviser Dr Nora Shannon, a Consultant Clinical Geneticist whose talks are always warmly received, and who has a special interest in trisomy 13 (Patau's syndrome) and trisomy 18 (Edwards' syndrome); Professor Joan K Morris, Centre for Environmental and Preventive Medicine, Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry and Queen Mary University of London, and Director NDSCR; and Erica Brown, Vice President of Acorns Children’s Hospices in the West Midlands, who has lectured and published internationally in the field of special education, spiritual and religious care, palliative care and bereavement.
There will be discussion groups, an optional Remembrance Service, the Annie and Noah balloon release in memory of SOFT babies and children, and a SOFT 20th Birthday Cake baked by the hotel Chef. To keep the children entertained on the Saturday there will be a crèche, and a youth theatre group, Shed @ The Park, will run a workshop. On Sunday 9th May there will be an informal discussion followed by a buffet lunch for those who have stayed overnight, and both days will be a wonderful opportunity to gain useful information and share emotions and memories.
Major Fundraising Events
SOFT UK is supported entirely by fundraising and donations, and money is raised in a variety of ways including coffee mornings and sponsored events.
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IN APRIL 2009 Catriona Jackson decided to run a 10km race in aid of SOFT UK after her niece Charlotte was born with trisomy 18. |
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If you are registered with SOFT UK and have lost a baby or child with trisomy 13 or trisomy 18 (Patau’s or Edwards’ syndromes) please contact us if you would like their name and dates entered under a star on our SOFT Remembrance page. |
The SOFT UK Scottish Family Day
Dunblane Hydro 07.11.09
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Full report and photographs in the March 2010 newsletter. |
It was great to see so many families and lovely to welcome some new faces, including Kyle (trisomy 13) and his family. The first speaker was the popular and ever informative Dr Una MacFadyen, a consultant pediatrician who has been associated with SOFT for many years. She talked primarily about the new National Development Plan in Scotland, a plan aiming to achieve parity of care for all, regardless of their illness or disability. Una suggested that families present would have lots of important information and feedback to submit to the current reviews that are going on and we should seek to be a part of this process. The Conference then welcomed Kirsty Freeland, the Coordinator of Strathcarron Hospice’s Children’s Bereavement Service, the first dedicated bereavement service for children in the Forth Valley that enables children to meet others in the same situation, normalizing their experiences and promoting peer support. Children then move on to resilience building work and establishing coping strategies. The service also ensures the young people receive support at home and helps parents deal with any grief issues they may be experiencing. Laura Petrie then gave a beautiful account of the too brief life of her and Charlie’s beautiful daughter Charlotte (trisomy18), Later everyone had a much needed catch up and it was great to have some dads and siblings volunteering for jobs next year. It was also wonderful to see how all our young people are getting on! The kids spent a fabulous day in the crèche getting to know each other and ‘helping’ the staff! |
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The deadline for contributions to the next newsletter was January 2010 and will be published in March. For future editions please email news, attach (jpg) photographs and include your address, telephone number and permission for publication to the editor Daniela Robbins at daniela.softnews@live.co.uk. We look forward to hearing from you! |
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Lily with her mum Sue, sister Ellen and head teacher Mr Sutcliffe AT GLEN HILLS SCHOOL we chose the SOFT UK charity for 2008/2009 as we know the fantastic work done by SOFT really benefits children such as Lily, who will be one of our pupils next year. |
SOFT UK publishes two helpful booklets
Your Unborn Baby and Your Baby can be read on our website, text only. Click on a booklet and choose a section from the index.
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 Explores the issues faced after a prenatal diagnosis of trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), what is involved when a termination is chosen and how to plan when the pregnancy continues. |
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 Gives information about the birth of a child with trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), and the early months of life, with sections on siblings, bereavement and a new pregnancy. |
SOFT UK also distributes the SOFT USA Caring For a Child booklet. Although SOFT UK booklets are free to families who have been affected by one of these conditions, professionals and students are asked for a donation of £5 per information pack to cover print/postage costs.