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25Th Anniversary Issue 25th Anniversary Issue 1991 - 2016 25 years of friendship and support Family Events | News | Family Stories | Fundraising Contents Welcome to our 25th Anniversary Issue... 25th Anniversary Issue You may have noticed that this issue of the newsletter is a little later in the year than usual but we couldn’t resist waiting until we 03 From the Editor SOFT UK Board of Trustees WOULD YOU LIKE TO WORK FOR SOFT UK? could include photos from the recent 25th anniversary weekend. Chair Jan Fowler From the Chair Treasurer Liz Egan Charity Administrator for SOFT UK So along with photos from the weekend and from the Scottish 04 family day back in September, this issue features a round-up of Trustee Christine Rose news from SOFT UK and from one of the membership bodies - Trustee Dr Daniela Robbins SOFT UK employs only one paid member of staff, our Charity Together for Short Lives. We can’t include everything in detail so 05 SOFT UK News Trustee Laura Petrie Administrator. The current post holder is leaving after over 3 years if you would like more information about any of the news items, working with us so we are seeking an enthusiastic individual with good Trustee John Capper please email us. Trustee Gareth Glendinning organisational and administrative skills and experience to take on the role. 06 Update News from Together for Short Lives Trustee Alison Pearson We have also included a number of family stories and tributes. Working with a small team of committed and passionate volunteers and As always, we are very grateful for permission to include them Trustees, you would be helping to ensure the objectives of our charity are Enquiries in the newsletter. They are all so touching and written with such Introducing Alison Pearson Meet successfully achieved. Whilst primarily dealing with the administration 07 Online www.soft.org.uk openness. If you have considered sharing your story in this way, SOFT UK’s newest Trustee Email [email protected] of the charity, the right applicant will find room to develop the role and we’d love to hear from you. Telephone 07923 056132 become involved in the development of the organisation. Thank you to Linda Powell and Daniel Baird for proofreading this 08 Family Story Lily-Alexis Membership Reporting to the Board of Trustees, you will provide general administrative issue. Huge thanks to Emily van Tonder and Stephen Scott for all Register online at our website duties, supporting the Board and network of volunteers. Responsibilities the lovely photos from the family days. www.soft.org.uk/Membership will include website management, supporting our fundraising function 10 SOFT UK Events News and photos and managing the charities duties and responsibilities with the Charity Finally, I would like to say thank you to all from the Scottish Family Day 2015 Registered Address Commission and OSCR. the wonderful people I have met during my time with SOFT. It is a very special SOFT UK 12 The Experts Research and Reviews 48 Froggatts Ride You will have experience in an administrative role, good IT skills and organisation and I’m grateful to have had Walmley ideally a good understanding or previous experience in the charitable or the opportunity to do my bit. Sutton Coldfield voluntary sector. SOFT UK Events 8 pages of news Here’s to the next 25 years of SOFT UK! 13 West Midlands and photos from the SOFT UK 25th B76 2TQ The role is offered on a fixed term (12 month) part time basis (15 hours Anniversary Family Weekend Best wishes per week) and would suit someone who is looking for flexibility. You would Kirsty Newsletter be working from home, with the necessary IT equipment provided and 21 Sadly Missed Nigel Bray All submissions can be sent to hours can be worked flexibly over the week. Infrequent travel is required Kirsty Bassett [email protected] to attend Trustee meetings and SOFT events, which are generally held at [email protected] weekends. (until 15 July) 22 Information Jeans for Genes, SOFT UK Yourgenome and Cerebra Established as a charity in 1991 The salary offered is £10k pa for a 15 hour post, plus travel expenses in by Jenny Robbins and Christine line with SOFT’s organisational policy. Rose. SOFT UK provides 23 Books The Still Point of the Turning information and support to If you are interested in knowing more, please contact Jan Fowler, Chair of World, A Good and Perfect Gift, The Boy in the Moon, The Day the Sea Went families affected by Trisomy 13 SOFT UK on [email protected] to arrange a telephone discussion Out and Never Came Back (Patau’s syndrome) and Trisomy or to request an application form. You will be asked to provide 2 work 18 (Edwards’ syndrome), and references. 08 related disorders. 24 Opinion The Right Decision Closing date is July 11th 2016. by Tessa Prebble, founder of SOFT UK is a registered charity Date for interview will be advised upon application. theoneinamillionbaby.com No. 1002918 (England and Wales) No. SC043341 (Scotland) 26 Information Including caring for your child and bereavement support for Online siblings soft.org.uk 25th Anniversary Booklets 21 facebook.com/SOFTUK 24 twitter.com/soft_uk Chris Rose has a limited number of spare copies of the 29 Fundraising In memory of Phoebe 25th Anniversary Booklet and can send you a copy if you Opinions expressed by authors are not specifically endorsed by SOFT missed out (or if you would like an extra copy). She can UK. No part of this publication may be reproduced or transmitted in any form without the written permission of the copyright holder 30 Fundraising Thank you to our send them out to you free-of-charge, just email: SOFT UK. wonderful supporters [email protected]. Image Copyrights - Cover Birthday candles © Alex Kosev; Page 9 Books © Quang Ho; Pages 3, 18, 19 © Tessa Prebble/ theoneinamillionbaby.com; Page 29 Harrogate tornadoflight / 2 SOFT UK Magazine Shutterstock.com SOFT UK Magazine 3 From the Chair SOFT UK News 25th Anniversary Weekend survey of parents who have, or have For a copy of the pilot study findings You can read all about SOFT’s 25th had, a child born with full, mosaic or contact [email protected]. anniversary weekend on page 14 partial Edwards Syndrome (Trisomy of this issue. It was a wonderful, 18). Trisomy Awareness Month supportive family event and we Thank you to everyone who shared Hello everyone, were so pleased that so many SOFT If you would like any more stories on Facebook in March. It members, old and new, were able to information, please contact: was uplifting to read about your I am writing this just a week after the fantastic 25th Anniversary come along. Meghan Linscott gorgeous children and the joy that SOFT Family weekend at the Hilton in Northampton. You will [email protected] they have brought to family and see from the pictures further on in this newsletter what a great Huge thanks to the organising Dr Amy Baraniak friends. weekend it was. Well over a hundred SOFT family members committee - Chris Rose, Jenny [email protected] attended, including a number of families with trisomy children, Robbins, Heidi Herdman, Sue Orme, Prof David Sheffield We are also grateful that a number as well as our volunteers and professional advisers. We were Fliss Reading, Liz Egan and John [email protected] of families were willing to share their privileged to have Professor John Carey, Siri Fuglem-Berg, Capper - for their work on this. experiences in local and national Erica Brown with us, all of whom presented and joined the The survey has now closed and media. It was so helpful in raising conversations with families, sharing their experiences and New Trustee we can look forward to seeing the awareness of trisomy in March. knowledge. A wonderful children’s entertainer kept the children amused during dinner, and We are very pleased to welcome a results soon. the sun shone for the balloon release! new Trustee to the Board. Alison If you would be willing to share your My thanks go to the organising committee, who did a wonderful job arranging everything and Pearson brings to the charity her Siblings Research Project experiences more widely as part of to Chris Rose and Jenny Robbin, who established SOFT UK over 25 years ago and without experiences of caring for daughter In 2013 The Department of Health SOFT’s ongoing communications, whom we would not have such a great support organisation today. Isabel who has Edwards’ syndrome. Social Services and Public Safety please get in touch. She also brings many professional called for research to increase The weekend also gave us the opportunity to welcome our latest Trustee – Alison Pearson. skills and personal qualities that will professionals’ understanding of The Future of SOFT UK Alison is mum to Isabel, who has trisomy 18 and is 5 years old. Unfortunately Isabel had been be a great asset to the Board. You family experiences, acknowledging If you were at the family weekend, unwell and was not able to attend but we were delighted that Alison was able to join us and can read more about Alison (and the importance of service-user you will already know a little bit attend her first Trustee meeting. Isabel) on page 7 of this issue or involvement. In partnership with about SOFT’s current position and read Alison’s article Never say never SOFT UK, Coventry University plans for the future. On June 11th there is a further important weekend event happening – a meeting with about our child, published in the undertook a pilot study which trustees, volunteers and supporters of SOFT to discuss and plan new developments for the BMJ on 6 May 2015: aimed to provide an insight into the On June 11th, SOFT’s Trustees, charity.
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