The Fragile X Society: Board of Directors

 

 

 

 

 

 

 

 

 

 

 

 

 

 

All the Directors of the Society can be contacted by email (see addresses below)

 

The current Board of Directors is as follows:

The Society is most fortunate in having a committed and hardworking Board of Directors who have the ultimate responsibility for both the day to day working of the Society, and also for our long term vision and strategy.

 

The Society can have up to 15 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 Society's AGM which is held every September.

 

If you are interested in becoming a Director of the Society, you can find out more here.

Chair: Dr Kirsten Johnson (kirsten@fragilex.org.uk)

I am married to Jonathan and we have three wonderful daughters, two of whom are affected by Fragile X. We joined the Society in 2008 and have appreciated over the years the many ways it supports families. 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 running my own business experience 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.

Vice Chair: Marie Williams (marie@fragilex.org.uk) 

I live in Cardiff with my long suffering and very supportive husband Phil, we have four children, Sian, Victoria, Elliot and Juliet.  We also have a granddaughter Erin. Our Son Elliot and daughters Sian and Victoria have a full mutation. Our Daughter Juliet and Granddaughter Erin are undiagnosed

I am passionate about equal opportunities and human rights. I recently retired from the Equality and Human Rights Commission.  

I have been a member of the Society since 1990, and have been on the committee for many years, and extremely happy to be a part of the team.

Treasurer: Tim Eccleshall

Bio coming soon.

 
Secretary: Jo Woosnam-Savage (jo@fragilex.org.uk)

Jo is going to be stepping down from the board for a period of maternity leave. Congratulations, Jo! 

Secretary (Maternity Cover): Rosie Martin (rosie@fragilex.org.uk)

I came across the 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 the 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. 

 
Research Officer: Rachel Instone (rachel@fragilex.org.uk) 
 

I live with my husband, Ayd, and three children in North Yorkshire. Our eldest boy is affected by Fragile X, but our girls are as yet untested. We became involved with the Fragile X Society in 2015 when our then 9 year old was given the diagnosis. I remember ringing the Fragile X Society after taking the call from the geneticist. I was so relieved to be able to speak to someone who understood and who was a fountain of knowledge and support.

 

My background is in publishing, but I recently completed an MSc in Psychology and am currently working as a Research Assistant for the University of Oxford. I was keen to help the society when they asked for Directors and I have a particular interest in the Board’s research committee.

 
 
 
Alex Case (alex@fragilex.org.uk)

My wife and I have 3 children,  two of whom have Fragile X Syndrome (FXS). I am a senior civil servant in the Ministry of Justice  in London and have previously spent 20 years in management consulting. With extensive government and commercial experience, I want to make a contribution  to the Society, as well as learn more and meet more people in the FXS world generally. 

Andy Clarke (andy@fragilex.org.uk)

I was inspired by meeting someone with FXS 8 years ago. His drive and parents' support showed me the ability that people with FXS can have . I want to support the Society to help members achieve their potential through using my experience in campaigning and lobbying.

Dr Lucia Elghali (lucia@fragilex.org.uk)

 

My family’s journey with Fragile X began in March 2013, when my 3 year old twin boys were diagnosed. Once we got over the initial shock, we needed help and the Society became a reliable source of information and support to us. I became a Director of the Society to give something back and ensure that other families can access similar support in the future.

 

I have worked in the field of environmental sustainability for 20 years, in roles involving research, project management, teaching and training, regulation, consultancy and policy development. I now work as a senior lecturer.

 

I use my research skills to keep abreast of the latest developments in evidence-based interventions for Fragile X. Through my involvement in the Society I hope to help keep members up-to-date with the latest developments in research, whilst also looking for opportunities to raise income. 

Steve Harris (steve@fragilex.org.uk)

I joined the Society in 2003.  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 a full mutation.

 

I was on the board of the Society 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 doing the social media.

 

I am retired and split my time between Stonehaven in Aberdeenshire and Hornsey in London.  My career involved everything from pet food to tourism and politics.

 

Craig McDonald (email tbc)

Craig is married to Gillian and live in Peebles, Scotland with their twin sons Stuart and Matthew who both have Fragile X Syndrome.

 

Craig is a former Trustee/Director of the Fragile X Society, and spent 7 years on the Board including 3 as the Chair prior to stepping down in November 2018.

 

He is delighted to be re-joining the Board again and contributing to the ongoing work underway.

 

Mary Martin (email tbc)

My brother Tom, who is three years younger than me has Full Mutation Fragile X Syndrome. My mother, Paula was a link member for Northern Ireland, 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 with Tom as his older sister, his best friend, his carer, as an educator and as an integral part of his developmental life; seeing him develop through age and through daily interactions with the world, Fragile X is 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 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 and others like him, worlds as fulfilling as he has made mine.

Tally Nothey (tally@fragilex.org.uk)

Bio coming soon.

Professor Gaia Scerif (gaia@fragilex.org.uk)

 

I have been working with young children and families with Fragile X Syndrome since 2000, when I started researching how young children pay attention. I am particularly interested in how attention influences behaviour in the classroom or at home, and what children remember or learn, primarily in the classroom.

 

I trained in Psychology and Cognitive Neuroscience at the University of St. Andrews (Scotland) and the Institute of Child Health (University College London). I have been based at the University of Oxford since 2006, where I am now Professor of Developmental Cognitive Neuroscience.

 

My work has convinced me that describing “the average child with Fragile X is only the starting point, and that it is only through an understanding of each child’s strengths, weaknesses and how these change over time, that we can advance knowledge and ultimately support children and their families best. 

Mark Smith (mark@fragilex.org.uk)

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 it has always been a part of our lives. We started attending the Fragile X Society Conferences a few years before having children to get exposure to the syndrome. Since then we have had two children. Kaleb has the full mutation but has benefited from an early diagnosis and intervention. 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 am a Service Delivery Manager at the University of Birmingham. This is a technical IT role that involves leading on high profile University wide services. In previous roles at the University I have specialised in bespoke solutions for the research community including data management and governance. 

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