Board of Directors
We are very grateful to have such a committed and hardworking Board of Directors at the Fragile X Society. The Board has ultimate responsibility for the day-to-day workings of the Society as well as long-term vision and strategy.
The Society can have up to 15 Board Directors (usually family members), and each year a third of the Directors resign by rotation and are eligible for re-election. New Directors, or those coming up for re-election, are appointed at the Annual General Meeting (AGM).
If you are interested in becoming a Director of the Fragile X Society, you can find out more here.
All the Directors of the Society can be contacted by email (see addresses below)
I live in Cardiff with my long suffering and very supportive husband Phil. We have four children, Sian, Victoria, Elliot and Juliet, and our granddaughter, Erin. Our son Elliot and daughters Sian and Victoria have a full mutation and our daughter Juliet and granddaughter Erin are undiagnosed. I am passionate about equal opportunities and human rights and recently retired from a career with the Equality and Human Rights Commission.
I have been a member of the Fragile X Society since 1990 and have been on the committee for many years – I am extremely happy to be a part of the team.
I am a retired Civil Servant now living with my wife, Anne in mid-Norfolk.
I spent over 30 years with HM Revenue & Customs in London and after my retirement, looked for voluntary work, preferably that would utilise my financial and legal background.
I became aware of the Treasurer vacancy when Anne attended the Society’s 2019 AGM in Birmingham. She suggested I might be interested; a few phone calls were made and a meeting arranged at the Society’s offices in Great Dunmow. On meeting the team, I had no doubt I wanted to take on the role and luckily the Trustees seemed to think I was suitable. I have thoroughly enjoyed working for the Society since early 2020 particularly the challenge of updating the Society’s financial accounting system!!! It is also a real privilege and pleasure to work with such a dedicated, talented and friendly group of people.
My connection with Fragile X is through Anne’s brother Nick, who I have known for over 40 years, though his condition was not diagnosed until the mid 1990’s. He lives in a care home in Slough and we try to visit him as often as possible, although as with many families, this has been a challenge during times of Covid.
My interests include performing in the works of Gilbert and Sullivan, building sheds, making jam and cooking curries, though not all at the same time!
I came across the Fragile X Society when my grandson was diagnosed with Fragile X and my daughter discovered the helpline which gave her such good advice and support. I have been retired for four years, having worked in Adult Education supporting students with learning and physical disabilities, as well as teaching study skills, literature and English as a foreign language.
I am delighted to be able to contribute in some way to the work of the Society which does such valuable work in supporting families affected by Fragile X.
Rosie has been co-opted to the board.
My contact with the Fragile X Society was initially through my brother, Nick, who has learning difficulties. These difficulties went unexplained until Nick was in his forties when an observant doctor encouraged my parents to take him for a blood test. This confirmed that Nick had Fragile X Syndrome. As his only direct relative, I act as his advocate so am involved in decisions about his care. He now lives in a care home where he is very settled.
I recently retired from teaching in an Infant School in Watford where I was SENCO for 16 years. Children at the school were predominantly from minority ethnic backgrounds and between them, parents, children and staff spoke over 40 home languages. This provided some challenges but it was an immensely rewarding environment in which to work. As well as contact with children, my job involved working with parents and other agencies to ensure that children with additional needs had the support they needed in school.
I moved to Norfolk two years ago and enjoy walking and cycling in the local countryside as well as trips to the coast for some bracing sea air!
I joined the Fragile X Society in 2003 and I am married to Edel, a carrier mum, whose involvement with the Society stretches back about 28 years. She is now Chief Executive of Mencap. I am stepdad to Ross, who has the full Fragile X gene mutation.
I was on the Fragile X Society’s Board from 2004 until 2017 (I was Chair for about 9 years) and, after having had some time off for good behaviour, I have recently returned to offer any assistance that I can. In the past I have volunteered as an interim CEO and helped to update our social media.
I am retired and currently split my time between Stonehaven in Aberdeenshire and Hornsey in London. My career involved everything from pet food to tourism and politics.
I am delighted to have joined the Board as the Society has been of great support and comfort to me and my family over many years. I have a son with Fragile X Syndrome, so I am well versed in the stresses and strains, as well as the joys, that this condition imposes upon families.
I have spent over 30 years in the financial services industry, principally advising CEOs and company boards on their investor relations and strategic communications with a wide variety of stakeholders including the national media. I was recently Chair of the capital markets business of one of the UK’s top 10 public relations agencies, MHP Communications. Since March 2023, I have moved to the global strategic communications firm, Dentons Global Advisors (DGA), where I am now a senior Partner in their London office.
I am much looking forward to making a value added contribution to this great UK charity which has real momentum and a growth mindset – as well as helping build its awareness.
I am a proud dad to Huw Llewelyn, a partner to Lois Jones and an uncle to three nieces and a nephew. I am a Learning Disability nurse working in an inpatient treatment and assessment ward and a Fragile X carrier.
I first came across Fragile X syndrome not long after my nephew was born. His sister, a few years older, had already been diagnosed with autism and when my nephew displayed signs of autism, a genetic cause was explored. They were subsequently diagnosed with Fragile X syndrome. My younger sister's two daughters were later given the same diagnosis.
Whilst Lois was pregnant, I was offered the same genetic testing. The results came back as a shock to find out that I too was a Fragile X carrier.
I am proud to be a board member for FX society. I am looking forward to the future of being part of the amazing charity, hopefully connecting with people and families across Wales and the rest of the UK whilst actively contributing towards what Fragile X Society has to offer.
I live in a rural area of North Wales, a few minutes away from Y Wyddfa (Snowdon) with my partner Chris and my son Huw. I’m a qualified Learning Disability Nurse in an Assessment and Treatment Unit here in Gwynedd. We support patients with a learning disability who have poor mental health and/or challenging behaviour.
My connection to Fragile X is through my partner Chris, who is also on the Board of Directors. Chris’ nieces and nephew have full mutation Fragile X and whilst I was pregnant with our son, we found out that Chris is a Fragile X carrier.
My interests include walking up the local mountains, with Moel Siabod one of my favourites, Coin collecting and my collection of 60+ Nike Trainers!!
My brother Tom, who is three years younger than me, has full mutation Fragile X Syndrome. My mother Paula was a Fragile X Society link member for Northern Ireland and my parents attended conferences in England in the very early days, so since I can remember Fragile X has been a huge part of my life.
Growing up as Tom’s older sister, best friend, carer, educator and as an integral part of his developmental life, I’ve seen him grow through age and his daily interactions with the world. As such, Fragile X is naturally a passion for me and my siblings, all of whom have entered the Nursing profession. I studied social work in Queen's University Belfast and I am currently working in a specialist service for children and families living with disabilities whilst pursuing a Masters in Psychology.
I am honoured to be on the Board of Directors for the Fragile X Society, as it is a small offer of giving back to something that has given me so much. It is my aim to ultimately help shape and promote Fragile X Syndrome to make Tom’s world, and others like him, as fulfilling as he has made mine.