SOFT UK Family Day May 7-8th 2011
A brilliant Conference Weekend with a creche, talks, laughter and tears. Events arranged for members included a Time of Remembrance, balloons and sky lanterns........
Thank you to SOFT Advisers and Speakers who made this 21st SOFT Conference Programme extra special
* Dr Nora Shannon Clinical Geneticist
* Professor John Carey Geneticist and Paediatrician
* Professor Joan Morris Research Director NDSCR
* Dr Lucy Kean Obstetrician, Subspecialist in Fetal Medicine
* Daniela Robbins 4th Year Medical Student and SOFT Newsletter Editor
* Erica Brown Acorns Children's Hospice
* David Strudley Acorns Children's Hospice
* Andre Bottin EAB LTD The new website
Speakers at the 2011 SOFT UK Conference Weekend
Jenny Robbins, (Beth 23.6.88- 24.9.88) the Chair of the Board of Trustees welcomed everybody, except Annamarie (Cathal 8.7.10) the Northern Ireland representative who she inadvertently missed out, sorry Annamarie!
SOFT Advisers who took part were: Dr Nora Shannon, Consultant Clinical Geneticist; Dr Lucy Kean Consultant in Fetal and Maternal Medicine; Professor Joan K Morris, Director NDSCR, Centre for Environmental and Preventive Medicine, Wolfson Institute of Preventive Medicine; Erica Brown, Vice President of Acorns Children's Hospices West Midlands, who has lectured and published internationally; and David Strudley the CEO of Acorns Children's Hospices. Andre Bottin, a parent and founder of EAB Ltd talked about the new website and the increased support it will now offer parents, and Daniela Robbins, the Newsletter Editor and a 4th year medical student at Bristol updated members with results from her research project.
Photograph above - Balloon Release 2010
Nora introduced the doctors who were speaking and played an active part in the discussions that followed. Lucy talked about the choice of care pathways parents should be given and what was being done to change outdated attitudes, and Joan told how the information about us is stored by the NHS and the way our statistics could be used to plan ahead if Government provided adequate funding.
David Strudley explained how the Children's Hospice Movement cared for parents when a baby was born, either unexpectedly or after a prenatal diagnosis, and SOFT's own Erica Brown gave a moving talk about the effects of a loss on siblings, and then held a Time of Remembrance for members who wanted to attend. Members could write loving messages in the Tribute Book or on beautiful white paper butterflies Erica had brought with her.
Parents who stayed in the main room watched as Andre (Chantal 13.5.91-17.7.91) showed slides of the new website he has created. If you are a member you can now register to enjoy the wide range of password protected facilities. Members can have an individual page, post photos, arrange a star, receive news feeds and join the members forum.
Guest Speaker Dr John Carey
Professor John Carey, the widely respected American Geneticist and Paediatrician gave a wonderful talk about trisomy 13/18 based on one he gave in Japan and to the World Congress of an overview of the syndromes: history, findings, survival figures, management, and outcomes along with personal stories. Parents were touched by his focus on individual families during his presentation, and the way he remembered all the childrens names; they were not just syndromes or statistics.
Dr Carey held a clinic for medical professionals, and chatted to members with children and those who wanted to ask questions about his genetic research. His talks with parents continued through meal times and late into the evening then began again early the following morning. Everyone agreed it was the best conference ever.
At 5.00 pm a strong breeze arrived and this was followed by a successful balloon release arranged by Demi (Connor Adam 13.6.01), in memory of SOFT Babies and Children. 200 balloons soared into the sky after the names of our SOFT angels together with a poem were read by Erica Brown. After dark there was a lantern release by Carole Morison, a regular attender of conferences since Katie was born ( 27.2.91-8.3.91) and Grant Fraser (Aimee Melody 27.6.10) who just escaped burning his fingers. On Sunday 9th May there were more informal discussions with Dr Carey, SOFT Advisers and Trustees.
The meeting ended at 1.00pm on Sunday and photographs are on the website. Feedback will be included in the Autumn newsletter.