Tinntus Éire

Welcome to Tinnitus Éire

You are not alone! Tinnitus affects about 10-15% of the people in Ireland and 2-3% of people living tinnitus are severely distressed by their ear sounds. Although there is no cure for tinnitus at this point, there are ways to manage your tinnitus. One of the most powerful ways is by finding your tinnitus community.Tinnitus Éire aims to start building a tinnitus community in Ireland in which we can mobilise the power of the arts to hear and hold each other in empathy, educate each other through accurate research-informed information and rise to show the world that tinnitus is NOT hopeless!

Awareness & Education

Understanding what tinnitus is and the research around tinnitus can be a step to moving towards coping with tinnitus. Here you will find videos and articles from researchers, clinicians and tinnitus experts, like yourselves, to give you different perspectives on tinnitus research, treatments and lived experiences of tinnitus to help you cope with your own tinnitus.

Community & Events

One of the other ways we can battle the loneliness of experiencing tinnitus, is by building our own community. This will consist of a monthly online coffee meetings and in-person events where we sing, walk, make poetry or visual art pieces together to bring together our individuals voices in harmony to show the world that tinnitus is neither lonely nor hopeless.

Events

Upcoming events:

Co-creative singing and poetry workshop (Date: TBD; Venue: TBD)

A song is a powerful way to communicate how we feel. Be it sad, happy, distraught, hopeful, painful or joyful – setting it to a tune somehow soothes our and others’ hearts. In this workshop in collaboration with Sing Ireland and Poetry Ireland, we will be creating our own lines of poetry, setting it to tune and singing our tinnitus story in one voice. Please fill out our form if you wish to be added to our mailing list to receive updates about this and our future events!

Past events:

June 9, 2023 – TRI 2023 – Finding your tinnitus community

As part of the International Tinnitus Research Initiative Annual Conference held at Trinity College Dublin, we organised our first community event which was funded by the Global Brain Health Institute. During this event, people from the tinnitus community learnt about the latest developments in tinnitus research and clinical practice from Prof. Berthold Langguth, Chair of the International Tinnitus Research Initiative Foundation. They also interacted with other patient organisations such as Tinnitus Hub,Tinnitus UK and Chime to learn about their services in the Netherlands, UK and Ireland respectively.

People also witnessed a sample of how to build a community through the arts by interacting with: Karen Meenan who runs the Forget-me-Nots choir, Making Hay theatre group and Lewy Body Ireland, a community for people with Lewy Body dementia and Dermot O’Callaghan from Sing Ireland. We also witnessed the power of community demonstrated by Dr. Aline Haas through a short video on Walking the Talk for Dementia. We saw how a seemingly simple idea of walking the Camino El Santiago together knocked down walls and brought together the people underneath. F

inally, we were also introduced to how experts with lived experience of tinnitus can and should be involved in research. Dr. Eoin Cotter from the Global Brain Health Institute and Dr. Kathryn Fackrell from the Nottingham Biomedical Research Centre - NIHR talked about Patient Public Involvement and how activities for people with lived experience should be done with them and not for them. This event inspired the approach we take at Tinnitus Éire to put the person with tinnitus at the centre and involve them in the decision making process on how to move forward as a community.

Join Tinnitus Éire

Tinnitus Éire is an association for people with lived experience of tinnitus. Here, we learn more about tinnitus, discuss latest developments in tinnitus research and clinical practice and get together as a community to sing, dance and build peer support and camaraderie through the arts. If you wish to join this community and receive updates on our event you can follow the link below.

click here.

Advisory group

Community Lead

Anusha Yasoda-Moha is a neuroscientist, dancer and science communicator. Her research is primarily directed at understanding why people perceive tinnitus in the first place, and how the sound and the associated distress impact networks in the brain. She is also the co-founder of Brain For Movement (BrainFM), an educational workshop that facilitates awareness about the brain and brain health through dance. Anusha is a passionate storyteller and believes in the power of the arts to bring people together.

Advisor for Evidence-based Education

Sven Vanneste is a Professor for Global Brain Health at Trinity College Dublin. Sven is one of the top three tinnitus researchers in the world. Being trained in a hospital setting, Sven has experience working with people with tinnitus for nearly 15 years. His expertise is in understanding how tinnitus may not just be a ear problem, but also a brain problem. Sven is also working on solutions for tinnitus using neuromodulation techniques like electrical and magnetic stimulation.

Advisor for Strategic Community Building

Gráinne McGettrick is an experienced Social Scientist and an advocate for people with dementia and acquired brain injury (ABI). Her work involves spear-heading several successful national policy advocacy campaigns to address health inequities, raise awareness, promote human rights of individuals experiencing exclusion due to a brain health condition and bring about policy change at a governmental level. She has an exemplary track record for building coalitions and collaborations with various academic institutions on research and policy initiatives in the brain health area.

Advisor for Lived Experience of Tinnitus

Dave Raftis is an expert living with tinnitus. Dave received an early retirement from the HSE after working for Pathology for many years combined with his service for the UN in war crimes investigation. Dave has been a volunteer for communities with hidden disabilities for several years now and served as part of committees influencing policy and decision making at the local, regional and national level. Dave finds that immersing in various activities of voluntary work helps him focus less on his Tinnitus and rise above the constant high pitch sound.

“Tinnitus is not a solo struggle; it's a symphony we face together. Through the power of community and unwavering awareness, we orchestrate hope, understanding, and unity, creating a harmonious path towards relief and support.”