Charities must be accountable and transparent in order to be effective. Significant advances have been made in recent years to standardise and establish regulation within the sector. A number of initiatives have been developed to facilitate this process and support charities to practice good governance.
Governance refers to how an organisation is run, directed and controlled. Good governance means that an organisation makes every effort to design and implement policies and procedures that will ensure it can operate effectively and efficiently, with integrity that honours the people whom it serves and who have made that possible through their donations.
Fighting Blindness is fully committed to this work and to ensuring that we have the best possible governance structures in place so that we are being accountable to our donors and beneficiaries.
The governing instrument of a corporate charity, previously known as a Memorandum and Articles of Association, is called a Constitution. You can download and read the Constitution of Fighting Blindness.
Founded in 1983, the charity was established as a patient-led organisation, and we remain as such. This means that people living with vision loss are always involved in our authority and decision making processes.
As a member organisation, Fighting Blindness refers to members as ‘members’, ‘representative members’, and sometimes where appropriate as ‘patients’. Around the world there are many ‘patient organisations’ that we have linked with and are representative of them. As there is no universally accepted definition for ‘patient organisation’ , our founders used the term.
The European Medicines Agency has developed a definition that is widely used: “Patients’ organisations are defined as not-for-profit organisations which are patient focussed, and whereby patients and/or carers (the latter when patients are unable to represent themselves) represent a majority of members in governing bodies.”
In 2021 founder Michael Griffith stated, “We go to doctors to be checked regularly. I really have difficulty understanding why the use of the word ‘patient’ is an issue for people. It’s not a big deal one way or the other; so long as we can continue doing the work that we are doing to find treatments.
“Fighting Blindness is connected with a string of charities right around the world – nearly all of those describe their members as ‘patients’; if we suddenly went away from that we would be in a different type of situation.”
Fighting Blindness is a membership based organisation with an annual subscription fee. Membership is open to anyone interested in the work of the organisation. The members form the general body that has responsibility for the constitution of the charity, appointment of the independent auditors, approval of the annual accounts and approval of appointments to the Board of Directors.
The Board of Directors is a voluntary group who bring different skills and expertise to the organisation. As a patient-led organisation, the majority of the Board is always made up of people who are affected by sight loss themselves, or have a close family member who is. The Chairman of the Board, along with the other directors, oversees the administration of our affairs and is charged with setting the strategy and goals of the organisation. There are also a number of voluntary sub-committees of the Board who focus more closely on and advise on specific areas of activity, for example research or fundraising.
The executive team is comprised of a Chief Executive along with six departments within the organisation: research, counselling, advocacy, finance, fundraising and operations. This staff are responsible for implementing the strategy and running the day to day activities of the company.
The Medical and Scientific Advisory Board (MSAB) is a committee which plays an invaluable role in advising the Directors by appraising new grant applications and monitoring on-going research projects. It offers counsels on research policies and strategy, as well as ensuring that the quality of our research is maintained. The MSAB consists of Irish and international experts in the fields of science and vision research.
Fighting Blindness receives approximately 13% of its funding from the HSE in support of our counselling services and from the Health Research Board in relation to some co-funded research projects. The remaining 87% is achieved through the many varied fundraising activities of our dedicated supporters.
Every year we hold an Annual General Meeting (AGM) where our annual accounts are presented to the members. These accounts are also included in our Annual Report which is available in a number of formats and is published on our website. Historic annual reports for the last 10 years are also available.
We operate all of our fundraising according to careful and accountable systems that protect and honour the generosity that is shown to us and the donations entrusted to us by private individuals, community groups, corporate supporters, industry partners, public funding and the wide range of income streams that we are grateful to have in pursuing our goals on behalf of people living with sight loss. The primary code that we adhere to is the Charities Regulator Fundraising Guidelines.
Charities SORP refers to the Statement of Recommended Practice of general accounting practice which has been interpreted for specific charity operations. Our Annual Accounts are prepared and audited according to SORP Guidelines. More information on SORP for charities can be found on The Wheel’s website.
It is important to note that all of the salaries in Fighting Blindness are in line with standards published by The Wheel, the representative body for community and voluntary organisations and charities in Ireland. We have a carefully managed budget with strict spending guidelines to ensure that we are as cost effective and vigilant as we can be when expending resources.
The Charities Regulatory Authority (CRA) was created as an independent statutory body in 2014 under the Charities Act 2009. It aims to build public trust and confidence in the management and administration of charitable organisations. Fighting Blindness is registered with the CRA and as such is required to report on its activities and finances to the Regulator on an annual basis. You can find out more on the CRA website.
We are aligned with the Charities Regulator Governance Code when it comes to all aspects of how the charity is managed and operated. The CRGC helps us to ensure that we are consistently working to achieve our goals and charitable objectives with the highest degree of integrity, transparency and efficiency in all matters. It involves a set of standards that should be met by non-profit organisations in its systems. These are centred on the following six guiding principles:
We have signed up to the detailed requirements of the Governance Code, a code of practice for Good Governance of Community, Voluntary and Charitable Organisations in Ireland. Further information is available on the Governance Code website.
Child Safeguarding means ensuring safe practice and appropriate responses by workers and volunteers to concerns about the safety or welfare of children, including online concerns, should these arise. Child safeguarding is about protecting the child from harm, promoting their welfare and in doing so creating an environment which enables children and young people to grow, develop and achieve their full potential.
Fighting Blindness has a Child Safeguarding Statement – defined in the Children First Act 2015. This includes a written assessment of risk of harm to children while availing of the service, and the measures that will be taken to manage any identified risks.
The Protected Disclosures Act 2014 aims to protect people who raise concerns about possible wrongdoing in the workplace. The Act, which came into effect on 15 July 2014, is often called the whistleblower legislation. It provides for redress for employees who are dismissed or otherwise penalised for having reported possible wrongdoing in the workplace. Read the Fighting Blindness Whistleblowing Policy (will begin download).
Situations can arise that someone may wish to make a complaint about the charity. Fighting Blindness has a formal complaints procedure whose purpose is intended to ensure that all complaints are handled fairly, consistently and wherever possible resolved to the complainant’s satisfaction. It is the charity’s responsibility to deal reasonably and sensitively with the complaint, and to take action where appropriate. Read the Fighting Blindness Complaints Policy (will begin download).
Good governance is a cornerstone of Fighting Blindness and we work carefully to ensure that we are accountable and transparent in all of our dealings. We welcome your questions or concerns in relation to any of the above. If you would like more information, please do not hesitate to contact Anna Moran on 01 6789 004 or anna.moran@fightingblindness.ie.
At Fighting Blindness our mission is to fund world-class research that will lead to treatments and cures for blindness. We are committed to supporting people and families who are affected by vision impairment via our counselling and support services. Through education and advocacy, we work to empower everyone in Ireland living with sight loss.
The Data Protection Officer (DPO) at Fighting Blindness is Anna Moran.