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SOFT UK 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 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 3Yrs 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 members and a trustee of Soft

 

 

 

 

 

 

Trustee Gareth Glendinning

I have been a Trustee at Soft 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. 

 


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