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Goodbye, Au Revoir, Slán

Beautiful video from Louis Hemmings. It tells the story of Holly who was stillborn in 1993, and her brothers Lawrence and Luke (from the perspective of Lawrence).

Constipation 101

Trisomy Talk has made a new online presentation (+ written transcript) on constipation - loads of information to help you manage your child's bowels.

AW14/15 newsletter

The submission date for any family stories, fundraising news, photos etc is 20 August. The newsletter will be out beg of Oct. Email Kirsty if you'd like to include anything.

Contact a Family Cymru

2014 marks the 15th anniversary of Contact a Family Cymru. They are celebrating with family parties across Wales. The next one will be  on Sun 16th Nov in Llandudno. Join them for Frozen, lunch and cake galore! To find out about this and future family parties, see the local events listings on their website.

Family Companion 2014

Download a free copy of Together for Short Lives' A Family Companion. Recently released in its third edition, this is a hugely valuable resource for parents/carers and family members of children who have been diagnosed with a life-limiting or life-threatening condition. 

Bereavement in the Workplace

Cruse is running one-day Bereavement in the Workplace workshops in central London on Thurs 22 Jan and Tues 24 Feb. They are designed for anyone who wants to understand the issues, responsibilities and support surrounding bereavement in the workplace, and how to communicate with employees and colleagues suffering after loss. Recommended for HR personnel, line managers and small- to medium-sized business owners.

2015 Dates for your diary

The SOFT UK family day will be taking place on Sun 17 May in Northampton. The Scottish family day will be on Sat 19 Sept in Renfrew. We'll have more details soon.

Fundraising packs

Stephanie has now stepped down as the fundraising coordinator - thanks very much to Stephanie for all her hard work. Please email if you are waiting for any bits and pieces for your fundraising events and Kirsty will get them in the post to you.

SOFT sibling research project

The SOFT Trustees would like to develop the support that we offer to siblings in families affected by trisomy 13, trisomy 18 and related conditions. As part of that process, they are considering commissioning Erica Brown from Coventry University to undertake a small piece of research on the impact of bereavement on siblings in affected families. This work will cover both siblings born before and born after the death of their sister or brother. We would like to gauge interest among SOFT families about being interviewed for this research - please could you let us know if you would be interested in taking part.

MSc research - T18 information

Take part in a research project by Kelly Bluett on the information needs of parents who have received a diagnosis of T18. More info and links to the survey.