EAI Statement, 26th September 2021

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The Endometriosis Association of Ireland experienced a sudden loss of two board members in April this year. As a result, although the organisation has continued to fulfil its charitable purposes, as outlined in the EAI constitution, during the summer, some areas of support which members and followers have a right to expect, have been lacking. It meant that during those months, 28 emails of the 222 personal queries received between the start of the year and 5th September, had not been replied to by that date. No posts were made on social media between June and 5th September, and there has been a delay to the summer newsletter. We apologise unreservedly for this and are working to rectify these shortcomings.

Membership fees

The fees paid by members are a vital source of funding for the EAI, helping to cover essential running costs and facilitating the organisation to fulfil its charitable purpose. In return, members get exclusive access to the members’ forum on the website, in a safe and secure environment.

However, because of the reduction in services outlined above, the board has made the decision to offer a refund of membership fees to anyone who emails in a request to info@endo.ie. Be assured that requesting a refund will not suspend your membership. You will still be considered a member until such time as membership fees are due for renewal. We ask you to please bear with us; a refund is guaranteed for anyone who requests it, but it can take time.   

The Board of Directors

Good governance is vital for the good health of any organisation. Key to good governance is a resilient board of directors, with a range of background experience, knowledge and training, who can bring a positive, collaborative spirit to fulfilling the charitable purposes of the organisation.

Good governance also requires succession planning for the board, which involves the ongoing recruitment of new trustees, who can bring new experience, energy and fresh ideas.

The sudden resignation of two board members in April, following the resignation of the former chairperson in 2020, left the EAI with just two board members. The Charities Regulatory Authority were notified, and professional advice was sought. The EAI was pushed into a transitional phase. For the EAI to become a sustainable and professionally run organisation, it needs to increase the capacity of the board, and to establish practices for phasing in new board members.

The EAI board is actively recruiting new members. In May of this year, the EAI co-opted Clodagh Lynam, a former member of the EAI board and former Chairperson. Board positions have been advertised on BoardMatch.ie, etc., and there are links from the EAI website. Two new members, Siobhán Condron and Kevin Kelly, each with key skills and experience needed for the board, have applied and been accepted by the board, bringing the number to five.

Operational Volunteers

When the board has built enough capacity to induct, train and supervise volunteers, the EAI will recruit volunteers for operational roles. These roles will be advertised publicly, and we would encourage members with an interest in volunteering to apply.

The Charitable Purpose of the EAI

Below is a summary of the charitable purpose of the Endometriosis Association of Ireland, as stated in the constitution of the organisation.

  1. To promote, safeguard and protect the interests of the endometriosis* community through support and education
  2. To educate the public, medical and other healthcare professionals.
  3. To promote research and the discussion of research.
  4. To contribute to national health and social objectives.
  5. To promote the development of better services.
  6. To promote the above purposes through all lawful means available.

*endometriosis and related conditions.

The EAI in 2021

The health emergency due to the global Covid-19 pandemic has had a huge impact on how we work and what we can do. For instance, the Volunteer Training that was so successful in 2019 had to be postponed in 2020 and again in 2021. However, here are some of the ways that the organisation has been fulfilling its charitable purpose so far this year.

In 2021, the EAI

  • Held a series of online talks with panels of experts during EndoMarch, covering
    • current endometriosis treatments and research
    • a full range of fertility issues
    • self-management of symptoms
    • nutrition
    • pelvic physiotherapy.
  • Made presentations about endometriosis at workplaces.
  • Met with a film production company to ensure an accurate description of endometriosis in a TV drama series.
  • Fed into a GP education programme about endometriosis.
  • Maintained links with international network with other endometriosis and patient organisations to share information and resources.
  • Signed contracts to be collaborators on two major endometriosis research projects.

The EAI is currently…

  • Working on the FAQ module for the website, to ensure easier access for a wider audience to accurate information about endometriosis.
  • Meeting with other organisations and stakeholders to develop a formal endometriosis education programme that will be available to secondary school students.
  • Planning media training for EAI members who would like to talk about and share their experience of living with endometriosis.
  • Continuing to help and promote other research projects.

The EAI board is also working on its reporting and governance obligations by…

  • Recruiting board members to create a resilient board, with a range of expertise and experience.
  • Liaising with the independent auditor on the filing of the 2020 Financial Report by the deadline on 30th September 2021.
  • Ensuring the EAI’s compliance with the Code of Governance for Charities and reporting on current compliance by the deadline of 31st October 2021.
  • Completing 2020 annual report for the Charities Regulatory Authority by the deadline on 31st October 2021.
  • Preparing for AGM 2021, which will take place in November.
  • Planning ahead for Information Day 2022.   

We would like to assure all our members, supporters and stakeholders that there has been no change in what the EAI stands for or strives for. We are aware of the limits and risks of a small volunteer-only organisation and are working now to mitigate those risks. As the only charity in Ireland for the betterment of the endometriosis community, it is vital that we do so.

We hope that this statement addresses the questions and concerns that have arisen recently on our social media pages. We recognise that these concerns have arisen due to our shortfalls in communication. We apologise unreservedly.

We welcome people raising any concerns they may have, as it shows a care for the EAI as an organisation, and a wider commitment to improving the conditions for people affected by endometriosis in Ireland. We would encourage anyone with a concern, a complaint or a question to email info@endo.ie where we can respond to you individually. Because of the volume of work, it may not be possible to respond immediately, so please bear with us and we thank you for your patience and support.

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