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See the film of the 2015 NI family day

A lovely film from this year's family day in Northern Ireland. Join us at the next one in 2017.


If you have a child who is 4yrs or over with intellectual disability due to a genetic cause and you are living in the UK, you are welcome to join the IMAGINE ID study. For more info and to register your interest.

25th anniversary booklet

Jenny and Chris are compiling a 20 page Anniversary Booklet that will be printed and given to those attending the Family Weekend. If you would like a photo and a paragraph about your family/ SOFT UK (about 130 words) included in the Booklet please email to: jennydrobbins@gmail.com  subject: SOFT UK. Please can the photo be above 50kb and under 10mb, preferably unedited as we will crop as necessary.

Parents' experiences following a T18 diagnosis

Meghan Linscott, Trainee Health Psychologist at the University of Derby, is exploring how parents cope psychologically when their child receives a diagnosis of trisomy 18. Meghan is surveying parents who have, or have had, a child born with full, mosaic or partial Edwards Syndrome (Trisomy 18). Link to the survey.

Trisomy Awareness Month

March is the month for raising awareness of trisomy. Head on over to Facebook to join the conversation.

Would you like to work for SOFT UK?

11/07/16 Applications are now closed

SOFT UK employs only one paid member of staff, our Charity Administrator. The current post holder is leaving after over 3 years working with us so we are seeking an enthusiastic individual with good organisational and administrative skills and experience to take on the role. 

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!

Children's Hospice Week 2014

This awareness-raising and fundraising week runs from 13 - 20 June. Did you take part in this week for your local children's hospice? Send us your news and we'll print it in the next SOFT newsletter.

X Factor single donation

We can't explain how grateful we are to Syco and Together for Short Lives for the recent donation of over £13,000 (£13,409 to be precise). Thank you!