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Jenny Robbins

In 1988, Jenny Robbins gave birth to a daughter Beth. Blood tests revealed Trisomy 13 when Beth was 4 days old and Jenny was asked whether she wanted to leave Beth at the hospital as the syndrome was considered terminal. Jenny and her husband nursed Beth at home and she was fed two hourly in a desperate attempt to help her gain weight. Apart from one visit from her GP and two visits from a community nurse there was no help or information and Beth died when she was 3 months old... 'the longest 12 weeks of my life!'. Jenny searched for other families and sent out detailed questionnaires to parents in the UK and America, and the first YOUR BABY booklet was compiled. Jenny stepped down as Chair of the Board of Trustees in November 2011.

Jenny Robbins

Christine Rose

In 1988 Christine Rose had a son, Jonathan, who suffered from a partial form of Trisomy 18.  Chris and her family continued to care for Jonathan, and he lived until he was 19 years old. A charity called 'In Touch' introduced Jenny and Chris to each other, and they founded SOFT UK. Jenny and Christine have since had healthy children and for over 20 years they have co-ordinated SOFT activities around the country together with a team of trustees and volunteers. Chris is a current member of the Board of Trustees.

Christine Rose

SOFT UK Trustees

As a registered charity SOFT UK is governed by a Board of Trustees, which is chaired by Jan Fowler. The Trustees administer the Charity according to the Trust Deed.


Chair Jan Fowler 


I have been the chair of SOFT UK since 2010. I lost two pregnancies myself, although not through Trisomy 13 or 18, before I had my daughter Jess, now a beautiful 23-year old. My experiences and those of a close friend led me to SOFT. I am a nurse by background and have worked in the NHS as a Director and Chief Executive for over 30 years. I hoped that my knowledge of the NHS might help SOFT raise awareness of Trisomy syndromes and support our families now and in the future.






Treasurer Liz Egan


My first baby Kieran was born with T18 Edward’s Syndrome and lived for 8 days. We were very fortunate to be handed a SOFT booklet and contact details in hospital as soon as Kieran’s diagnosis was confirmed. The support from SOFT was invaluable and this made me want to become involved to help others. I became Scottish Rep in 1996 and then went on to become a Trustee. I am also the current SOFT treasurer. I find my voluntary work with SOFT very rewarding and feel very proud to be involved with a charity that offers much needed support to parents at such a difficult time in their lives.








Trustee & Co-founder Chris Rose


In 1988 Christine Rose had a son, Jonathan, who suffered from a partial form of trisomy 18.  Chris and her family continued to care for Jonathan, and he lived until he was 19 years old. A charity called 'In Touch' introduced Jenny and Chris to each other, and they founded SOFT UK. Jenny and Christine have since had healthy children and for over 20 years they have co-ordinated SOFT activities around the country together with a team of trustees and volunteers. Chris is a current member of the Board of Trustees.








Trustee Dr Daniela Robbins


SOFT UK has always been a part in my life.  My sister Beth had Trisomy 13 and was born in 1988 when there was very little information or support.  Sadly, Beth died when she was just 12 weeks old, but my mother Jenny went on to co-found SOFT with Christine Rose and I was born soon afterwards.I remember playing in the crèche at the early SOFT UK conferences and I am now a Trustee!
Beth and many SOFT UK families I have met over the years have influenced my career choices and approach to work as a GP. I look forward to helping SOFT UK continue to support families in the future.

Trustee John Capper

I have been a trustee of SOFT UK for a few years after first volunteering to help SOFT where we could. My Wife Louise & I were first introduced to SOFT when we found out at our 21 week scan that our unborn son had Trisomy 18. Our son Jack was born full term and lived for 31 magical and difficult days. At the time we had two other children, Charlotte (5) & Harry (3) and it was when we first met with people from SOFT at one of the family days we didn’t feel so alone and isolated. We’ve since been blessed with another daughter Emily who is now 3 years old and keeps the rest of us on our toes.
I’m a company director in the construction industry but it is as a family that we are all proud to be supporters and a trustee of SOFT.







Trustee Gareth Glendinning

I have been a Trustee at SOFT UK for a few years having found out about them online. My daughter, Phoebe, was born with Trisomy 18 or Edwards' Syndrome in 2006 and lived for 3 days and her death was the hardest thing we have ever had to deal with. SOFT UK provided much needed support & information as we knew very little about Trisomy and being actively involved has been really beneficial. 

A keen martial artist and runner, I enjoy raising funds through sponsored 10k races, events which I hope to continue into the future.








Trustee Alison Pearson 

I am mum to Isabel, who has full Trisomy 18 and her older brother Harry. I work as a self employed educational consultant and trainer and became a trustee in 2016. I recognise that SOFT aims to support people in quite different places: both emotionally and practically. I hope my experiences might contribute to the rich backgrounds of all the trustees so that between us we can see through a whole range of lenses in order to support all our members.









Trustee Juliette Bradley

In 2010 our first daughter Amelia was born with Edwards' Syndrome. She lived 16 days and we have precious moments to remember. We contacted SOFT a few years later for support, they were wonderful, it felt like a life line realising we were not alone. The support was invaluable and helped us grieve. In 2017 myself and my husband felt ready to help other families, like us, in Amelia’s memory. I have been a support volunteer that answers any questions and offers support to any friends, families or health professionals affected by Trisomy 13 or 18. Stepping up to become a Trustee I will help oversee this vital service. 





Trustee Vanessa Monroy

I joined as a volunteer after I lost my son Nathanial in 2017 to Trisomy 18. To find a charity who actually understood my son’s condition was a really big deal for me. I want to help other families through one of the most difficult times in their lives. I realise every story is different but just having someone to listen helps so much. I’m really passionate about making a change and raising awareness of Trisomy by educating and supporting medical professionals and the community to create a caring environment that embraces families impacted by Trisomy.









Trustee Marlene Graham

In 2010, I was 17.5 weeks pregnant when I discovered my son, Logan, had Trisomy 18. I can still remember how broken, lost and empty I felt. The information and support provided by SOFT UK, and other families I met through the charity,  was invaluable. Logan was stillborn during the 38th week of pregnancy. I've had 2 more children who know about their big brother and my involvement with SOFT UK helps us to keep his memory alive. With over 13 years experience of volunteering for different organisations and a career of over 4 years within fundraising in the Third Sector, I'm delighted to be able to use my knowledge and experience within SOFT UK. 








Trustee Rosalind Hill

Rosalind started volunteering for SOFT in 2019, putting her experience as a writer and editor to use. Her daughter, Martha, was diagnosed with full Trisomy 18 following the routine 12-week screening and was born in February 2019. Rosalind is passionate about raising awareness of Trisomy 18, as well as changing the perceptions of many in the medical community towards the condition. With a background in communications, Rosalind is ideally placed to oversee our content, media and information in her Trustee capacity.




Caroline Heap- Operations Manager 

As Operations Manager Caroline's remit will be to work alongside the Board of Trustees to put our dreams to SOFT UK into practice.  She will be responsible for the Operational Management of the charity, including all of our staff and volunteer team.  Caroline will be looking to work with the SOFT UK community to develop the supports we offer to families.  SOFT UK also hopes to expand its work with the wider community, particularly health services, to raise awareness of Trisomy and the experiences of Trisomy families in the UK. 

Caroline is excited to have joined the SOFT UK team, bringing with her extensitve experience in the voluntary sector:

'I have worked for years as a manager within a large charity, organising events, leading teams of volunteers and managing projects, so I'm very happy to be bringing this experience and enthusiasm to SOFT UK, where there is a great sense of warmth, community and family. I love working for organisations that make a real difference, and SOFT UK certainly does that. I'm very proud to join the team.'
If you would like to contact Caroline directly, she would love to hear from you on her shiny new SOFT UK email address:

Sonia Sankoli- Communications Officer 

Sonia's remit includes modernising all our communications streams to better support SOFT Families and families who come to us seeking support.  She will also aim to raise awareness of the Trisomy Community and of the work of SOFT UK, to improve families' experiences of service provision, particularly within Health services. 
Sonia is a Trisomy parent herself and has been volunteering with SOFT UK for over three years, before she took the leap into paid employment with us: 
"I'm Sonia and I have been a support volunteer for SOFT UK since 2017. My son was born in 2015 and was diagnosed at 10 days with full trisomy 13. He survived for 6 beautiful months and 4 days and left me and my family with the best of memories. SOFT UK was a great support to me after I lost my son and I got to know more families in my position. I joined as a volunteer to hopefully help other families that find themselves in my situation and keep my son's legacy going with raising awareness of trisomy.
I have since joined SOFT UK as a Communications Officer where I will be responsible for managing Soft's social media presence as well as the main contact for communication with new and existing members, volunteers and trustees. I look forward to sharing new and groundbreaking content that will keep strengthening SOFT UK's powerful work."
If you have any bright ideas for our communications, don't hesitate to get in touch with her on

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.