I have daughters Marion (born 1998) and Florence (born 2004) who has an extra chromosome.
As a founder of the charity and now it’s Manager I am responsible for all aspects of the charity’s programmes and development. Since we began in 2005 I have had the privilege of working with many families from birth to the teenage years and am passionate about developing and maintaining programmes of support that improve their experiences from diagnosis to adulthood.
I am very aware how important it is to make a good start with a baby as it can set the tone for a long time to come. Like many of our members I found the original diagnosis traumatic. Our birth story is in the Your Stories section of the site. Initially we knew relatively little about DS and what little the professionals around us knew seemed to be resoundingly negative. Added to that Florence had a difficult first year and was in hospital several times with pneumonia. When she was well, there were endless issues with hearing, heart and digestion. My life as a campaigner and service developer grew directly from that experience and has developed as my networks and experience expanded. Since we started some things have improved in Hertfordshire, but there is still so much more to do to ensure that families receive the support they need when they need it.
I firmly believe that it is important to connect as a community and make time to enjoy and promote our children together. In my experience this is an essential basis for being well informed and equipped to take on the challenges of managing health, education and training.
In my previous career I was a museum curator and then a content development manager for a museums advisory body. In my current role I have 15 years’ experience working with families and agencies around Down’s Syndrome and I have undertaken IPSEA Level 1 SEND Advisor training (completed April 2016) as well as IPSEA Adviceline volunteer training (2013). I received the Comet Award for Services to the Community.
I live in St Albans with my husband Arron and our three children Edwyn, Rose and Rufus. Rose, our middle child born in 2010, has Down’s syndrome.
We were told Rose had DS a few hours after her birth. Rose was also born with large holes in the heart and gastric and hip problems. A few weeks after birth Rose contracted pneumonia and went into heart failure which resulted in us spending the vast majority of her first six months in hospital whilst she underwent multiple operations. It looked rather bleak for her at times but finally we were allowed to bring home a rather fragile Rose, albeit one who required significant medical care, in September 2010.
It was at this time we first came into contact with Up on Down’s and found their friendship, support and advice invaluable as we began to come to terms with the fact Rose had DS; a detail that had seemed insignificant during the previous months. The joy and relief of seeing children with DS and their families just getting on with life and having fun at normal family events at this stage cannot be overestimated and Up on Down’s provides the setting for this in a way that no other agency we came into contact with could.
As Rose has grown and her health improved we’ve had a time to become more involved with UoD. I now manage the organisation’s daily accounts, coordinate it’s speech development programme, produce the monthly newsletter, coordinate events and work across all areas of the programme.
Hello, my name is Eleanor. I am proud to be the mother of 2 very adorable children. Our family has been a part of the Up on Downs community since late 2016 when we first learned that our daughter would be born with her extra sparkle.
In my former career I was a Payroll Administrator of 15+ years, working for various companies that included a budget airline, kitchen joinery firm and a chocolate factory.
I am excited to be joining UoD and I hope to become a useful asset to the team. Some of you may already know me – my family regularly attends the monthly meetings, Christmas party and most of the outings.
My duties with UoD will be varied but I am very keen to share my passion for signing and visual learning. I have completed a Makaton foundation course. My daughter is beginning to communicate in sign which is an extremely exciting time for us.
I do have a long road to travel and a huge amount still to learn along the way as I navigate what it means to have a child with Down’s Syndrome. Groups like Up on Downs and other parents have been a massive part of my steep learning curve and have been a great help to me during these last 3 years. By working with Up on Downs I hope to further my education, for the benefit of my daughter, but also to begin to ‘pay back’ into this wonderful community that has looked after us so well.
Trustee – Chair
I have a background in medical recruitment and business development for a leading clinical research organisation.
I first came to the charity as a voluntary play leader in 2008. In this role I enjoyed playing with the children and came to know many of the families very well. After a couple of years I volunteered for trusteeship and have since held the posts of Secretary and Safeguarding Officer and now Chair.
I enjoy being a part of a charity that supports parents and children with downs syndrome. Parents are well supported by the services we fund and the support offered by the charity. It also provides a support community for parents who can speak to other parents who have shared similar experiences. I have always been passionate about helping the community and am proud to be a part of this wonderful charity.
Trustee – Treasurer
I am a Director at GBRE Global Investors and currently hold the Treasurer position as a Trustee of Up on Downs. My wife and I live in Hitchin. We started working with Up on Downs as volunteer playleaders over 10 years ago, assisting the children at family meetings, Christmas parties and entertaining them while parents attended workshops and moved on to jointly hold a Trusteeship. Now we have our own family we have remained close to the charity helping it to grow and manage it’s finances effectively so that it can continue to support local families.
Sarah has been working closely with the committee for the past couple of years and has now formally taken up a Trusteeship. Sarah has a special interest in fundraising and campaigning for better healthcare for children with DS, particularly the early awareness of diabetes. Sarah is a mum of two daughters, her younger daughter Emily, who had Down’s syndrome, passed away in 2019.
I live with my husband and three children in Stevenage, Hertfordshire. My youngest son, Arafat, has Down Syndrome. I have sought help and support from UponDowns charity organisation on many occasions, especially with Arafat’s educational and developmental needs. He currently attends their speech and language sessions. I work part time as a civil servant at the Department for Education (DfE).
I am a Systems Consultant at BskyB and am the data manager for Up on Downs. I live in St Albans with my wife Jan and our three children Edwyn, Rose and Rufus. Rose, our middle child born in 2010, has Down’s syndrome.
I started attending the family meetings when my daughter was a baby and have been volunteering with events ever since. As a Trustee I am responsible for the organisation’s data management including policies, website and technical support. I also assist with anything from helping Santa at the Christmas party to barbecuing sausages at fundraisers and regularly support the family meetings.
My daughter Lydia, who has down syndrome, was born in 2000. Support at the time was very limited, and what helped me most was the understanding and information I received from other families who had a child with DS. So in 2004 I started the journey of the group that became Up on Downs. It has been lovely to watch the group grow and know that so many other families have benefited from sharing their knowledge and experiences.
Lydia leads a busy life attending college and enjoying the various social groups that she is a part of. Over the past 2 years she has been making great progress increasing her independence in supported living, and I’m very proud of her.
I work as a test analyst for a conservation charity.
Bio – TBC