Kathleen King, Chairperson of the Endometriosis Association of Ireland
As the Chairperson of the Endometriosis Association of Ireland (EAI), I wish to take this opportunity to introduce the work of the EAI.
The EAI was formed in 1987 when a magazine (Woman's Way) ran a piece on endometriosis. They received a number of letters from Irish women looking for support, these letters were passed back to one of the enquirers who set about forming the organisation. It was registered as a charity and limited company. The EAI has always been volunteer-led; we do not have any paid staff or full-time volunteers. The board/volunteers tended to be women living with endometriosis and its associated symptoms. In recent years, the board has contained family members - not directly affected by endometriosis – but bringing a unique and important input. Each volunteer has given up their own time and energy to help sustain and grow the organisation.
The EAI Membership
The EAI is funded by membership fees (€30 / €15 concession annually) and by fundraising efforts of our volunteers and members. We apply for small sources of funding for discrete pieces of work, like the training day or our information day. We have found that in the past, applications for larger grants exclude us due to our low income. Our average membership is in the region of 150. Membership and volunteer interaction varies due to changes in the individuals’ life – such as pregnancy, recovery post surgical excision and often exhaustion from running a organisation on such small resources. Fundraising is on a small individual scale, with supporters running marathons, hosting coffee mornings, doing parachute jumps and using online platforms like Facebook to raise vital funds.
Our accounts are prepared and audited annually, and we prepare an annual activity report. We are a little behind at the moment, but hope to have the 2017 report due shortly. All our financial activity can be viewed via our registration with the Charities Regulatory Authority. You can view this here.
Our income goes towards our rent at Carmichael Centre for Voluntary Groups, membership fees of other charitable organisations, printing leaflets and other materials like t shirts/bags, purchasing materials (books), maintaining website, attending meetings/conferences, volunteer expenses, insurance, auditors fees, running events and other essential expenses.
We are on the journey to accept the Governance Code and also to comply with the Charities Regulator Code – both of which are a massive achievement for a small charity like the EAI.
Internationally, the EAI is well recognised and respected. We are members of the World Endometriosis Society and the newly formed World Endometriosis Organisation (WEO) which represents advocates. I have been appointed as a member of the steering group for the WEO. Where possible, we send delegates to international conferences and have most recently had representation at the EndoDubai, European Endometriosis Conference and the World Congress on Endometriosis. Delegates take time from their work and lives to attend, they feedback to the EAI any important developments and information for the wider benefit of the members and endometriosis community. Events like this are also an important opportunity for the charities / organisations to get together to share resources and experiences and to support each other. The majority of the European charities are small organisations, some are partially state funded and some have paid staff.
The EAI and those living with endometriosis face significant challenges such as access to effective healthcare with timely diagnosis, poor public awareness and difficulties in the workplace.
The main aims of the EAI are set out in our constitution :
To achieve our aims, we provide information and support via email, online, in person and to anyone who requests. We give talks on endometriosis when invited. We host information days that include a variety of speakers and topics. Our most recent information day was 2017 where almost 200 attendees listened to international speakers and availed of our therapy room. In 2019, the information day will be held on November 2nd in Dublin. We host support meetings and are in the process of training individuals to become regional support network volunteers. With our new website, we will reopen our support forum for EAI members. Support via email queries will remain open to all. The EAI posts information leaflets to hospitals, GPs and colleges – however have no control on whether or not they are displayed. We aim to work with the HSE to provide our leaflet as a standard in all facilities. The EAI encourages its members and followers to participate in appropriate research into endometriosis and its allied conditions. We use social media to share relevant material and to engage our followers. Where queries arise on any social media platform, a basic amount of information is given in the reply and the requestor is encouraged to email us.
Our vision for training volunteers is to help the EAI to grow – with increasing awareness, governance requirements and public demand – additional help is needed. There is a need for face to face support groups, despite the prevalence of online support groups. Volunteers will be asked to take part in 2 days of training – one day on running a peer support group and one day on endometriosis training. We aim to create a community of volunteers that can help support each other and the EAI through their local activities. Additional training and meetings for the support network will take place at least annually to allow volunteers to chat with others and to receive support and discuss any issues that arise.
For those volunteers that do not wish to run a peer support group, we welcome your skills and support for all other areas of the organisation. For some, this will be in helping run the online forum, accounts, social media content, website posts, fundraising, event planning etc. We need each and every volunteer - as you all bring a unique skill set.
I look forward to seeing you at one of our events, and please get in touch if you need any more information or support.
Endometriosis Association of Ireland