Copyright © 2018 The Fragile X Society

 

Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

 

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 which 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 concert pianist. I have recorded fourteen discs of music for various record labels and my music is played on stations around the world. I bring media and public speaking experience; project development and management expertise; and running my own business experience to the board. I stood as the Liberal Democrat Parliamentary Candidate for Chesham & Amersham in the 2015 General Election, and am now the candidate for North Devon. I am keen to develop good government policy which supports and enables each person in society. 

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: Jennifer Keene (jenni@fragilex.org.uk)
 

I am new to the board and excited to be involved. I work as a Finance Manager for a large engineering company and am happy to have the opportunity to use my professional skills to help such a worthy cause. I've recently taken over from the previous treasurer Isabel, and my main responsibilities are to reconcile the monthly accounts and run payroll. I have a family connection in that my mother's two brothers both have Fragile X, but she is not a carrier. 

 
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.

 
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 Pre-implantation Genetic Diagnosis (PGD) and is therefore unaffected. Fragile X has also had an impact on my wife's health and her fathers (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 service creation and management for any University wide service such as printing and student clusters. In previous roles at the University I have specialised in bespoke solutions for the research community including data management and governance.

 
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. 

 

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. 

 

Robert Dell (rob@fragilex.org.uk)

I became aware of Fragile X a few years ago when my son, Jacob (now 6), was diagnosed with full mutation Fragile X.  The Fragile X Society became an invaluable source of support and information that helped the family not only learn about Fragile X, but also learn how to live with Fragile X.  They made what was an incredibly difficult time much easier.

 

The Society had a noticeable impact on my daughter Josie,10, who had to come to terms with a little brother that got much of the attention.  She channelled this in a positive way, presenting to her school about the Society, and as a result her school picked it as Charity of the Year, raising over £8000.

 

When the Society approached me about the possibility of becoming a Director I was both honoured and delighted.  I felt it was an opportunity to do something to repay the kindness and help the Society has given to me and my family, and to further raise awareness whenever I can.  Professionally, I am a solicitor, having worked in London for 21 years, and hopefully I can use some of my experience and expertise to return some of the invaluable help the Fragile X Society have given to me.

Tally Nothey (tally@fragilex.org.uk)

Bio coming soon.