Board of Directors

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 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 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.’

My name is Jonny and I am a Director at the Scottish mental health charity, Change Mental Health. I have held a number of executive leadership positions in charities across England and Scotland and am passionate about ensuring that everyone gets a fair chance of a good life. Outside of work, I am the very proud husband and a dad to three wonderful children and have a close connection with Fragile X.  One of our children has full mutation of Fragile X and my wife is a carrier.

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I was extremely keen to support the Fragile X Society after the significant positive impact the charity has had on our family’s life, especially in the period after finding out about the condition and the months and years that followed.

Hello Fragile X Society Members! My name is Zeinab Ali and I’m excited to be one of the newest members on the Board of Trustees.

I’m an autistic Marketing and Communications professional and I’m looking forward to sharing my knowledge with the fantastic Fragile X Society team to help raise awareness about Fragile X.

I am honoured to join the Fragile X Society as a new Director. My connection to Fragile X Syndrome is deeply personal.  My wonderful son lives with non-verbal autism, ADHD, and dyspraxia, and I am a carrier of Fragile X. Our experiences have driven my passion for educating others and advocating for greater understanding and inclusion. I hold a Bachelor’s degree in Economics and continuously pursue professional development in finance. In addition to my new role, I serve as a governor at a special school, where I work to promote inclusive education.

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I have also in the past been actively involved in organising events for the Great Ormond Street Hospital charity. My vision for the Fragile X Society is centred on love, unity, and acceptance.  I also lead a local group for autistic children, which has been incredibly rewarding.

I am excited about the future of the Fragile X Society and am committed to making a positive difference in the lives of individuals and families affected by Fragile X Syndrome. I look forward to working together to achieve our shared goals.

"I am mum to 2 fantastic children, one of whom has full mutation Fragile X, alongside a number of other diagnoses. Fragile X was a new discovery to us, until the diagnosis when they were only 2 years of age. We had never heard of FX, nor knew anyone with it. We felt a little bit alone, which is when we came across the Fragile X Society. We contacted the team and were provided with some excellent resources and guidance from the Families & Professional Advisors, which helped us navigate the first few years of the trials and tribulations of living with an FMFX Son and the fact I was a carrier.

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Since then, we have educated family members on Fragile X Syndrome, along with anyone else that will listen. I am so pleased to have the opportunity to join the Fragile X Society Board of Directors. I work in the NHS with a focus on Digital and have recently undertaken a Master in Business Administration (MBA) and hope to bring these skills to help with the growth and sustainability of the Society.

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I am grateful I am in a position to able to give something back to the Society who helped us in our early days and to ensure we can continue to provide this support to families new and old.

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.