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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 Laura Petrie

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 UK 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 & 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 


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