The consultation period for the Charities Act commenced in early 2013. The charity and voluntary sector had worked hard for Charities Act, developing a Governance Code for charities to work towards, and articulating the need for a register and regulator. It was not before time, as the scandals which rocked the Central Remedial Clinic later in the year highlighted the absolute need for all charities to be open and transparent, and to ensure that all donations are used for the charitable purposes stated. Although the Endometriosis Association of Ireland does not receive any grants from government or HSE, and does not have any employees, it will have – like all other charities in Ireland – been subject to some erosion of public trust.
Despite the tiny size of the organisation and its miniscule income, the Endometriosis Association of Ireland, as an incorporated body, must employ an auditor to audit the annual accounts. These are presented at the Annual General Meeting to the members and filed with Companies Office, so are always available to public scrutiny.
We had just 41 members in 2013, which is a disappointingly low figure. It is these members and the people who raised sponsorship and made donations who made it possible for the association to survive. A grant of €1,200 from the Hospital Saturday Fund went towards the costs of holding the annual Endometriosis Information Day.
The people who make up the working structure of the association have all put in amazing work over 2013. Not all this is immediately visible, but will be an invaluable investment in the future. As has been outlined in previous reports, our website was glitchy and failing to provide the kind of resource we wanted either for our members or the wider endometriosis community. Planning a new website, anticipating future needs, is a substantial piece of work, and that project took the best part of a year before reaching test stage.
International contacts and collaborations continued, as did networking with Irish charities. Complying with the Charity Governance Code is described as a journey, and it is. It is about learning and reviewing, and making changes towards best practice. With no staff, it is a huge commitment on the shoulders of our volunteers.
We just had one support meeting during 2013 in Lucan, as unfortunately the one planned for Galway fell through. The Endometriosis Information Day, held in March, was the highlight of our year’s events. It was well attended by people who had traveled far and wide to come. We are grateful to all the volunteers on the day, as well as the speakers and therapists. The feedback was very positive and confirmed the very real need for endometriosis information and support.
Not everyone can travel to support meetings or special events, and so our presence in social media continues to be an important way of sharing endometriosis information and mitigating the isolation that endometriosis brings to women. Ever more people – women and men – are engaging with us in this way. It has also brought international contacts closer, and made possible phenomena such as the Million Women March For Endometriosis.
2013 was a challenging year, but one of sustainable achievements and a strengthening of the association.