Facebook Twitter Instagram Facebook Twitter Instagram


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.

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.


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 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 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 Laura Petrie

Hi I’m Laura,
In 2006 we contacted soft UK because we found out during our pregnancy that our daughter had Trisomy 18. Her name was Charlotte and she lived for six months. During the pregnancy and afterwards we received support from SOFT UK. The following year we ended another pregnancy due to severe brain abnormalities. We named her Jackie. I became involved with soft as a support volunteer in 2010 supporting families who had been affected by Trisomy 18 and Trisomy 13. In 2011 I joined the board of trustees and work with support volunteers and supporting families. 

Trustee Becky Wirth

My daughter Heidi was diagnosed with Full Trisomy 18 when I was 14 weeks pregnant and was born two weeks before her due date in April 2020. Sadly, she only lived for 3 ½ precious hours but my husband and I discovered that there was joy, hope and meaning in her life even though it was very short. I am a huge supporter of the work that SOFT UK does to educate medical professionals about Trisomy. I am also passionate about helping other families as they walk this difficult path by directing them to the advice and information they need as well as also supporting families who are looking after their beautiful children who are living with Trisomy.




Shaun Dowdall - Operations Manager 

I’m Shaun and my journey with SOFT started in 2019 when we found out that there was a high chance of Trisomy in our second pregnancy. After months of research, and positive scans, Emilia was born happy and healthy, showing that every case really is unique.

I joined SOFT UK as their Engagement Officer in early 2021, and now I've taken on the role of Operations Manager. I've met some incredible people, and I can't wait to meet some more in the future. 

If you would like to contact Shaun directly, please email: 

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

Kate Hart - Communications Officer (maternity cover)

I’m Kate and I’m looking forward to contributing to the important work that SOFT UK does. It's a charity and a cause close to my heart, so I am excited about being able to give back. I came to SOFT UK in 2020 when I had a beautiful daughter, Hannah, who was diagnosed with Trisomy 18 during pregnancy. She lived for 54 wonderful days, and I am so grateful for the support I got from this community. I look forward to making a difference!

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