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)
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Dr Kirsten Johnson

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I am married to Jonathan and we have three wonderful daughters, two of whom are affected by Fragile X. We joined the Fragile X Society in 2008 and have appreciated the many ways it supports families over the years. Now it is time to give something back! I am particularly concerned about how Fragile X affects girls and pre-mutation carrier issues. 

 

I have a doctorate in music and am a classical pianist. I have recorded 18 discs of solo music for various record labels and my music is played on stations around the world. I bring creative thinking, public speaking experience, project development and management expertise, and experience of running my own business to the Board. In 2020, I co-authored an article for a leading academic journal, Frontiers, entitled Fragile X Premutation Associated Conditions, which you can read here.

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Marie Williams

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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.

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Tim Eccleshall

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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!

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John Quaye

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Secretary

Email TBC

I live in the Isle of Man with my wife Helene and our three children, John, Nell and Matilda.

 

I first became aware of Fragile X when my sister's son, Gael, was diagnosed with full mutation Fragile X whilst they were living in Boston. Subsequently a number of others in my extended family in Ireland were diagnosed. 

 

In my day job I am a Chartered Accountant specialising in trusts and companies. I was delighted to be appointed Secretary of the Society where I hope I can contribute to the good work the Society does.

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Andrew Jaques

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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 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 am currently the Chair of the capital markets business of one of the UK’s top 10 public relations agencies, MHP Communications.

 

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.

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Lois Jones

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Director

email tbc

Bio coming soon.

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Chris Jones

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Director

Bio coming soon.

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Tamara Martin

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Director

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Hello from Scotland!

When our son was diagnosed with Fragile X in 2017 it felt like our world had been pulled apart. We called the Fragile X Society immediately & the next day we received lots of supporting information. It was the first moment we felt like, ‘it will be ok, we can do this!’

 

My interest in Fragile X started started much earlier at University when I was learning about Developmental Neuroscience. Six nephews & 2 nieces later there were no indications that Fragile X was present in the family so it was a complete surprise to learn of our sons diagnosis. 

 

With a supported school placement & a younger sister to keep him on his toes, our son surprises us everyday & always makes us laugh!

 

During my working hours I am a research scientist with expertise in Cardiovascular Pharmacology. Currently I work for a medical research charity where I’m focused on the clinical development of in vitro diagnostics. 

 

By joining the board I hope to use my passion for basic science and medical research to help drive studies into novel therapies (drugs & care pathways) for Fragile X.

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Rosie Martin

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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.  

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. 

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Steve Harris

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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.

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Mary Martin

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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.

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Mark Smith

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My wife found out she was a pre-mutation carrier for Fragile X Syndrome when she was 17. A few months later we met, and Fragile X has been a part of our lives ever since. We started attending the Fragile X Society conferences a few years before having children to learn as much as we could about the syndrome. Since then, we have had two children; Kaleb has the full mutation but has benefited from an early diagnosis and intervention, and Alby is the result of Preimplantation Genetic Diagnosis (PGD) and is therefore unaffected. Fragile X has also had an impact on my wife's health and her father's (Fragile X related Ataxia).
 
Throughout all of this, the Fragile X Society has provided us with support and information that has made the challenging times easier. Much like the other Directors, I am keen to give something back to the Society.  


During my working hours I deliver Microsoft 365 technologies within the NHS. This is a technical IT role that involves leading on regional and national services. In previous roles I worked at the University of Birmingham and specialised in bespoke solutions for the research community including data management and governance.

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Katherine Zwink

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I feel I have been involved with the Society from when it started as my mother was one of its founding members. I have a full mutation Fragile X and mild learning difficulties. In my early 20s, I spoke at the Society's Girls Workshop at a family conference in Birmingham and also took part in Dr Marcia Braden's workshops for girls with Fragile X at the NSFX International Conferences held in the US. It was great to meet up with other girls with Fragile X.

Though I left school with no qualifications I have passed since then NVQ Level 2 in Beauty Therapy, Child Care and Education and last year passed Level 3 in Personal Training. I am a self-employed Ironing Lady and clean our local church and village hall. I also work as a PA for people with learning disabilities. I still live at home with my parents and brother who also has Fragile X. I am willing to share my experience of having Fragile X with other girls and families and, also of being a sister of a more affected brother.

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Anne Eccleshall

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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!