Board of Directors

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.  

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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.

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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.  

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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.

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Rosie has been co-opted to the board. 

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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 35 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 2024, I have moved to the London-based financial and corporate communications agency, Alma Strategic Communications, where I am a Partner.

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.  

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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.  

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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.  

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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.

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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.  

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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.