Dunmow, Essex (On-site)
£32,000 per year
Permanent, Full-time
Job description

The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. The charity has now grown to consist of a team of dedicated employees and volunteers, supporting thousands of individuals and families. 

Our vision is a world where people living with Fragile X are:  

  • Valued, included and have their individual needs met - and that Fragile X is recognised and understood by professionals and the public. 

  • Not alone - that they have access to an active community of people who understand. 

  • Empowered - through evidence-based knowledge about Fragile X. 

Due to service's and society's attitudes, a lack of awareness, and features caused by the condition, people living with Fragile X and their families face wide-ranging challenges. Families regularly tell us that generic supports and services do not understand their needs adequately, or that they felt lost in broader organisations relating to autism or learning disability. We are working to change this.  

Our Aims are: 

  • To provide information and practical guidance to support and empower individuals and families living with Fragile X Syndrome and Fragile X-associated conditions 

  • To educate and inform the public and professionals about Fragile X in order to raise awareness and understanding of the syndrome and improve support for all individuals affected by Fragile X 

  • To encourage research into all aspects of Fragile X through the participation of our family members in Fragile X studies and to publicise the results. 

  • To raise funds to carry out our work 

The new Managing Director will work with the Board, staff and volunteers to achieve these aims. A key aspect of the role will be Fundraising, as we rely on grants and donations for our operational budget. Further details on the work of the Fragile X Society can be found on our website and social media. 


Full Job Description

Role summary 

  • To oversee Financial Reporting, Fundraising, Communications and Staff for the Fragile X Society, in accordance with our aims as set out in the policies and long-term strategy agreed by the Board of Directors. 
  • To work with the Board of Directors to increase awareness of Fragile X in order to improve the lives of those with a diagnosis of Fragile X and associated conditions.
  • To increase engagement with the membership in order to be responsive to their needs.


Duties and Responsibilities


  • To devise and implement a fund-raising strategy. To co-ordinate all fundraising efforts, including large donor relations, regular giving campaigns, charity fundraising events, grants applications, and other fundraising activities.
  • To maintain relationships with, and report back to, donors and grant-giving organisations.
  • To provide comprehensive reports, including performance against budgets and business plans to each Board of Directors’ meeting and as requested.

Financial Reporting

  • To oversee accounts and work with the Treasurer in managing the accounts for the Society.
  • To formulate forward budgets for the approval of the Directors based on previous expenditure, restricted funds available and new monies; and controlling/monitoring expenditure.
  • To compile the Annual Report and organise the Annual General Meeting.

Management and Administration

Staff and volunteers

  • To support a staffing structure to enable the Society to consolidate and grow within the framework laid down by the Directors.
  • To be responsible for the recruitment, selection and induction of new staff members.
  • To have day to day managerial responsibility for staff and volunteers.  This includes regular supervision, support, training and annual appraisal.
  • To manage and support IT resources (hardware and software) for staff and volunteers to the Society, as it relates to their role.

Strategic oversight

  • To be involved in the development and implementation of a long-term strategy for the Society and ensure that set targets and objectives are met through planned and consistent progress.
  • To address the growing demands on the Society by regular review of existing services and, where necessary, adapt them or develop new ones.
  • To ensure that the Society provides and organises its services and activities efficiently and well.
  • To ensure that the Society provides a culturally sensitive, equitable and accessible service to all its members.
  • In line with the strategic plan and together with colleagues to regularly monitor and evaluate the services provided by the Society and the use made of all aspects of support and information provision by:  its members (both family and associate), and non-members (newly diagnosed families, undiagnosed families and professionals).

Additional management duties

  • To be responsible for the management and administration of the Society in implementing the policies set by the Board of Directors. 
  • To maintain accurate recording of all work done using manual and computerised systems as appropriate for monitoring, co-ordinating and reporting purposes.
  • To organise and attend all Fragile X Society conferences (currently one family and one research conference per year).
  • To attend all executive management meetings and the Annual General Meeting.


  • With the Board, to develop a strategy to raise awareness of Fragile X Syndrome and the Fragile X Society amongst the general public, professional groups and policy makers.
  • To develop relationships and establish links with other organisations within the voluntary, statutory and private sectors in order to advance the aims of the Society
  • To develop a strategy to encourage membership of the Society.
  • To maintain the website.
  • To oversee social media accounts.
  • To prepare and send monthly email newsletters to members and supporters.


To undertake such other duties as may be required from time to time in furtherance of the work of the Fragile X Society.


Knowledge, Skills, Qualifications and Experience Required

Knowledge and Experience

It is essential that the post holder have:

  • Experience of effective fundraising within the non-profit and charity sector
  • Skills in financial management including budget control and reporting
  • Experience of supporting or advocating for those with disabilities or additional needs

Specialised knowledge and experience in any of the following areas would be an advantage:

  • Fragile X Syndrome
  • Genetic conditions
  • Learning Disability
  • Autism


  • Excellent communication skills for this outward-facing role.
  • Strong leadership skills.
  • The ability to work effectively towards strategic service goals and deadlines.
  • Structured and methodical approach to problem solving.
  • Ability to prioritise and schedule assigned workloads in the face of conflicting demands.


  • A minimum of five GCSEs (grade C or above) essential, including Maths and English is required, with A-levels and/or degree desirable.
  • Full driving license useful but not essential.


Problem-Solving/ Decision-Making Requirements

… without reference to others

  • Use own knowledge and expertise to ensure staff are productive and able to fulfil their roles. To ensure that all fundraising opportunities are explored. To ensure the Board of Directors are kept informed of service and financial status. To use own judgement in identifying opportunities to improve our services.

… after consulting others

  • To lead on various strategic plans including events and service reviews, and work with sub-committees, the Board, staff and volunteers in taking ideas forward.

… or that would be referred to someone else

  • When working as a member of a strategic or project team, ensure that the lead is given opportunity to decide on the provided recommendations.


Internal and External Relationships

Fragile X Society Staff

Daily face-to-face, electronic and telephony communications are required in order to fulfil all duties. This role is based in the main office with the rest of the Fragile X Society staff. The post holder must have the ability to communicate clearly at all levels across the organisation.


Our membership primarily consists of people directly affected by Fragile X syndrome and their families. The post holder will communicate with members in a range of different ways at different times. This will include, but not be limited to, face to face, in writing, by email, by telephone and regular newsletters.

Board of Directors

The Board of Directors meets several times per year in person but also regularly communicates by phone, email and through other collaboration platforms. The post holder will be expected to interact across the range of mediums to ensure clear and constant communication is maintained.


The Fragile X Society works closely with the Research Community and the post holder will need to maintain and further develop these relationships.

Other organisations

The Fragile X Society also has partnerships and relationships with other organisations. These should be progressed if there is strategic value in doing so.


The post holder will be required to work with the press including the creation and contribution of content as and when required. This may include interviews and general representation of the Fragile X Society to the wider public across print, TV and social media platforms.


Application Details

Closing Date:         Wednesday, 21 August, 5pm 

Schedule of Appointment: 

Interviews, 29 August, between 10am and 5pm, at our offices as above. 

Successful applicant to begin work as soon as feasible thereafter, with an initial probation period of 6 months before the role becomes permanent. 

Please send applications in the form of covering letter, CV. and names/contact details of three references to: 

Dr Kirsten Johnson, Chair, Board of Directors, Fragile X Society

More about Fragile X Society

Fragile X Syndrome is the most common inherited cause of learning disability, and most common single-gene cause of autism. We provide informati... Read more

Posted on: 23 July 2019
Closed date: 21 August 2019 at 17:00
Tags: Fundraising, Senior Management