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Dr John Carey to attend SOFT UK's 25th anniversary weekend!


We are delighted that Dr John Carey will be among the guests joining us to celebrate 25 years of SOFT UK. It's all taking place on 14th and 15th May 2016 at the Hilton Northampton. Book your place now. See you there!

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.

Sign up now for 18th Sept

We are so pleased to have been chosen as a recipient of funding from this year's Jeans for Genes Day. Please do what you can to support this fantastic event!

Charity Golf Day - 17th Sept

Don't miss out on your tickets for the Charity Golf Day on Thurs 17th Sept at the Leatherhead Golf Club. Tickets for players are £55 (with £15 tickets for spectators). Held in memory of Alice, all proceeds go to Shooting Star Hospice, Chase and SOFT UK. More info here.

Colour Graphics

Huge thanks to James and the team at Colour Graphics for their incredibly generous donation of a SOFT banner, flyers and posters - all printed to our design. They'll be hugely useful at upcoming events where we'll be telling midwives and other clinicians more about the support SOFT offers. www.colourgraphics.com

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.

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!