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 therapy programme, produce the monthly newsletter, coordinate events and work across all areas of the programme.
|Eleanor Stapley-Alexander- Development Associate|
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 and I am also studying level 1 British Sign Language (BSL). 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.
I am a parent of three children. My oldest daughter is 13 and had Downs Syndrome and ASD. She was born at Watford General hospital with serious heart problems and we spent many weeks and our first Christmas in hospital. It was a very special time. Much health intervention was needed from first surgery at 7 days old to full heart repair aged 4. And of course there have been ongoing general maintenance appointments and therapies ever since.
A fab health visitor introduced to some other parents of young babes with DS in Watford. This provided great friendships. I set up a support and play group for families of children with DS in Watford in 2002-2005.
My younger children include a football mad and muddy 11yr old boy and a very pink 8 year old girl who does not like Frozen (unlike her big sister who wants it to snow anytime so she can out her blue dress). The Kaleidoscope of life!
Heath stabilised, there were very many other challenges around schooling, stamina, sleep (in school but not at home!), a couple of appeals to SENDIST, the ombudsman and four schools until we found a special school place where our daughter could be happy. This is not the average pathway through education for children with DS! ASD was at the route of many difficulties – sadly no one realised at the time.
I was HR and training lead at Watford Mencap from 2001 to 2014 and in 2011 I decided to use my professional training skills to support parent carers trying to navigate SEND World. I began to deliver workshops in signing as well as Early Support, Expert Carer Health and EHCP events. Through Essential Learning & Information which I founded, I have run events for parents and practitioners across Herts; I strongly believe that by improving information as well as services and support for parents and families – all the children and yes, even parents, can be enabled to lead more ordinary lives.
In 2012 I joined Herts Parent Carer Involvement group. Now vice chair, I represent parents on SEND Reforms, Workforce Development, Early support & learning for parents and practitioners, and the new Local Offer among a variety of other things. I deliver parent perspective presentations in LA workforce training events ‘what’s working, what’s not’; recently a practitioner, a parent carer herself, thanked me saying that as a mother of a young adult, she had ’forgotten what it was like to be a carer!’
It’s hard work! But definitely a lot more manageable with support from parent carer friends. The most precious of allies – you can always find the right expert among them when you need any sort of help so I am delighted to join UOD team to support their special home grown sharing of expertise in problem solving, fun finding and more ordinary lives.
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.
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.
I live in Weathampstead with my twins Ella and Morgan. Morgan has Down’s Syndrome.
I have spent over 30 years as an Inspector with Hertfordshire Constabulary and have my own business as a Utility Warehouse distributor.
I got involved with Up on Downs when they made a support visit shortly after the twins were born. Since then we have attended many family events and training courses. We have sought their specialist help with schooling and Morgan has benefitted from a longstanding involvement in their speech therapy groups. I have also taken on various fundraising projects for the charity and am now a Trustee with special interest in business networking and fundraising.
|Cassie Clark – Trustee|
I am the Deputy Academic Registrar at Bloomsbury Institute.
I first became involved with the charity as a volunteer in 2008, helping with children’s activities. Later, I became a Trustee, creating the organisation’s first Trustee Handbook and with a special focus on new parent information.
My husband Gary and I also became parents to Harry, who has Down’s Syndrome. This led me to re-engage more regularly with the charity in 2016. I have published articles and given radio interviews to raise awareness and understanding of Down’s Syndrome. I regularly speak up on behalf of parents and the charity to corporate bodies and the media. I also set up the charity’s first public Facebook pages.
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.