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’m delighted to be introducing myself as a new trustee of the Fragile X Society. Becoming part of this charity is something very close to my heart, the Society has supported members of my family, and I’m incredibly grateful for the difference it has made to their lives.
 
I bring over 15 years of experience in strategic and sales leadership across the public and private sectors in the UK and Europe. In 2024, I completed an MSc in Sustainable Development, which has further shaped my interest in organisational strategy, positive change, and inclusive services. I hope to use this experience to support the Society’s long-term stability, reach, and impact.
 
I know first-hand how important it is for families to feel supported. I’m passionate about strengthening the Society’s work  and ensuring that those affected by Fragile X continue to have a strong, supportive voice behind them.
 
I’m really looking forward to meeting more of our members and contributing to the exciting journey ahead.

I am a retired Civil Servant, having spent over 30 years working for HM Revenue & Customs. I joined the Fragile X Society as Treasurer in 2020, bringing my financial and legal experience to the role.

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My connection with Fragile X is through a family member, giving me a personal understanding of the condition and the importance of the Society's work.

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I thoroughly enjoy being part of such a dedicated and friendly team and helping to support the Society's continued development.

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Outside of my voluntary work, I enjoy musical theatre, DIY and cooking.

My connection with the Fragile X Society is through a close family member who has Fragile X syndrome. This has given me a personal understanding of the challenges faced by individuals and families, particularly around care and support.

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I have a background in education, having worked as a teacher and Special Educational Needs Coordinator (SENCO) for 16 years. During this time, I worked closely with children, families and professionals to ensure that those with additional needs received the support they required.

Now retired, I enjoy walking, cycling and spending time outdoors.

‘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.

TBC

My connection to Fragile X goes back to when I did Camp America and by chance I was sent to look after someone who has Fragile X. That person remains a lifelong friend 15 years later. Working with him and his family showed me what comprehensive support can do to help people with disabilities. As the brother of someone with a severe learning disability, it really changed my view of what's possible and I wanted to give back to the Fragile X community. 

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I currently work for Ahead Partnership, a social enterprise that supports young people to achieve their potential through careers education. I'm responsible for building the business and introducing new programmes with interesting employers. Prior to that, I spent more than a decade working in corporate affairs and lobbying Government, both in the private and public sector. Outside of that, my proudest achievement is my two children.
 

I am currently studying Social and Political Sciences and am delighted to be joining the Board of the Fragile X Society as a Director.

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I have had a lifelong connection with the Society through my family, so it is an organisation that means a great deal to me. I am passionate about making sure younger voices are heard and represented, and I look forward to helping the Society connect with younger members and families, raise awareness and make a positive difference.

I am currently a final-year medical student and soon-to-be Foundation Doctor, with a strong interest in healthcare, education and advocacy.

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With several members of my family affected by Fragile X and associated conditions, I have a personal connection to the Society and its work. I am passionate about raising awareness and improving understanding of Fragile X among healthcare professionals, as well as helping to strengthen the links between research, clinical practice and the experiences of individuals and families affected by Fragile X.

I have a background in finance, fintech and marketing, and I am delighted to be joining the Board of Trustees at the Fragile X Society.

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My brother Henry has Fragile X syndrome, so the work of the Society is something very close to my heart. As a sibling, I understand the importance of the support and information available to families, and I am passionate about helping the Society raise awareness, reach more people and continue to make a positive difference to those affected by Fragile X.