2024 EOPD.ie Strategy Update

Dear Member,

Review of 2023

We want to update you on the progress made in 2023 and our plans for 2024.

      •    Seminars and information sharing

    In 2023, we continued to organise informative talks and to collaborate with other charities with the aim of sharing information.

    In 2023, EOPD.ie organised 3 online talks; in February, Prof. Richard Walsh, Neurologist delivered a presentation on Deep Brain Stimulation; in November, Rachel Fitzpatrick, TCD presented to us on Social Cognition in Parkinson’s Disease; and in December we hosted a seminar on Oral Hygiene and Parkinson’s Disease.

    We also collaborated with Enable Ireland for an information update on Assistive Technology and with Parkinson’s Community Awareness for a discussion on the importance of knowledge and information exchange.

    In addition to the above virtual events, we also were pleased to collaborate in the hosting of in person information sessions for the benefit of our community, namely the Parkinson’s Information event in Clifden Station House Hotel in October with the Galway branch of the PAI and the Trinity College Dublin “Parkie” event in October.

        •     Exercise classes

      From September through to December, EOPD.ie organised UL (University of Limerick) Exercise classes.

      We also signposted for our community various classes, including Rock Steady Boxing and Exwell classes.

          •     Lobbying

        At EOPD.ie we advocate for people living with Parkinson’s.

        We are a member of the focus group with NAI (Neurological Alliance of Ireland), DFI (Disability Federation of Ireland), and HSE mapping neurological services across Ireland and will continue this involvement in 2024. As part of this group, we met with Minister Anne Rabbitt to present the group’s report.

        We were also part of the European wide patient advocacy group which lobbied the European Parliament for better notice around medication shortages and we raised awareness of this issue through our website and newsletter.

            •     Website and newsletter

          In early 2023, we embarked on a significant upgrade of our website (www.eopd.ie) and newsletter. We have received positive feedback on each of these.

              •     Fundraising

            We would like to thank Paddy and Ann O’Shea for their hard work in creating a beautiful calendar, as they also did last year. Also, we are incredibly grateful to Ian O’Brien, who climbed the 28 highest peaks in Europe and the UK, in support of EOPD.ie, raising €93k, which is an extraordinary achievement. We are truly appreciative of all the donations we receive throughout the year and thank everyone for their support.

            Our plans for 2024

            EOPD.ie wants to continue to support its members and all who live with Early Onset Parkinson’s in a manner which meets their needs. 

            In relation to advocacy/lobbying, of immediate concern to EOPD.ie are the following:

              • the status of approval of pumped drug delivery,
              • availability of medical devices,
              • non-availability of prescription drugs, identification of pipeline for pharmaceuticals and a
              • medical card for all people diagnosed with EOPD. 

              We will continue our support for people recently diagnosed with Early Onset Parkinson’s Disease including informal face to face meetings. 

              We will continue to provide access to exercise classes of various types where the demand is there from the community and where appropriately qualified instructors are available. Otherwise, we will signpost to our members and the community details of third-party classes.

              We expect that phase 2 of the neuro-mapping project will identify additional services and resources, including classes and we will keep you informed accordingly.

              We would welcome feedback from members on the type of information seminars and talks which they want. We note that the classes and talks organised in 2023 were poorly attended (except for the presentation by Professor Walsh). Going forward we are reluctant to organise seminars and talks unless we can be certain that they will be adequately attended. We will however continue to signpost relevant and appropriate seminars and sources of information to our members and the community.

              We will endeavour to raise awareness of Early Onset Parkinson’s to appropriate third parties, including Gardaí, hospitals, supermarkets, pubs and restaurants etc.

              Volunteers are encouraged to support our 2024 programme. We also need members to get involved in subcommittees and potentially join the board. 

              We have got off to an excellent start on our fundraising for 2024 with the biker event and the calendar. Funding will be required to maintain and grow the organisation for the benefit of members and the Parkinson’s community.

              We welcome Denise Roche as our General Operations Manager, and she will be your primary point of contact going forward (info@eopd.ie).

              We look forward to seeing you in the near future.

              Regards,

              Kieran Fallon

              Chairperson

              If you would like to read the full strategy, you can find our Strategy Document 2023 – 2026 here.

              Facebook
              Twitter
              LinkedIn