Home > News


To keep up to date with our news, subscribe to our RSS feed by clicking or tapping on the orange button:

Would you like to become a Trustee?

SOFT UK is currently recruiting for new members of the Board of Trustees. You can help shape the future of SOFT support for families affected by T13/18. Find out more.

Dan jumps for SOFT in memory of Evie

In September 2015, Dan Holmes will be making the leap for SOFT in memory of Evie Scott. Dan is neither a keen flyer nor a seasoned parachutist but he wanted to take on this personal challenge in support of close friends. You can find out more and give to Dan online.

London Marathon 2016

We've just been told that SOFT has won a place on next year's Virgin London Marathon - taking place on Sun 24th April 2016. We'll be drawing one name out of the hat on Monday 27th July. If you're willing to commit to a fundraising target of £2000 (and you're happy to use Virgin Money Giving to set up your online fundraising page), then send an email to Kirsty by midnight on 26th July. Good luck!

SOFT Development Day

We would like to invite all our wonderful volunteers to a development session on Saturday 16 May at the Hilton Northampton. Help us shape the future of SOFT so we can better support families. We'll start about 3pm and have dinner around 7.30pm (family members welcome). Email Kirsty for more information and to reserve your hotel room (free of charge for volunteers and their families).

Prenatal Screening

From April 2015 women in England will be offered first trimester screening for Edwards' syndrome and Patau's syndrome (T18/T13). These conditions are already screened for in England in the second trimester. The change follows updated guidance for the NHS Fetal Anomaly Screening Programme; ensuring women continue to receive early, high quality information about their pregnancy. Changes will be reflected in the leaflet that parents receive - Screening Tests for You and Your Baby - and in guidance given to health professionals. For more info visit FASP

Family Day 17 May

Online bookings have now closed for the SOFT UK Family Day on 17th May. Please email SOFT to check on last minute availability of places. See you all soon!

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.