Events

Past events:

February 8, 2024 – Sing your tinnitus story – a co-creative song writing workshop

 

 

In honour of Tinnitus Awareness Week, Tinnitus Eire, Global Brain Health Institute and PPI Ignite Trinity College Dublin are organising a Research Talk by Prof. Sven Vanneste, renowned tinnitus expert and launching the video documentary "Our Tinnitus Story" - which is a collective narrative of voices from diverse professionals in the tinnitus field in Ireland, including community members with lived experience.

 

October 22, 2023 – Sing your tinnitus story – a co-creative song writing workshop

 

 

 

The creative arts is a powerful self-expression tool. It provides a safe space for us to express things that we may not be comfortable expressing through conversation.

Tinnitus is one such disorder. It’s the constant buzzing of the ear and a hidden disability that millions of people face around the globe. Yet, we never hear a lot about it. The people who do suffer from this on an everyday basis, suffer in isolation, which can only exacerbate the condition.

The idea of the co-creative “Sing your tinnitus story” organised as part of the National PPI Ignite Festival was to bring to light this hidden disability. We invited people with lived experience of tinnitus to express their stories through song.

The full day workshop was led by the award-winning musician Luan Parle with whose help the community created a song titled “My Constant Company”. The song captures a day in the live of a person with tinnitus, their feelings, their challenges, fears and hopes.

The workshop and individual testimonials from the community were filmed by the Award-winning filmmaker Kilian Waters from Arcade Film Ltd. The video documentary will be released as part of Tinnitus Awareness Week: February 5 – 11, 2024.

To our knowledge, Sunday marked the first co-creative song writing workshop featuring people with tinnitus. If you may be interested in participating in future events, please fill out our form to be added on to our mailing list.

We express our gratitude to the co-organisers:

  • Mr. Dermot O’Callaghan – CEO, Sing Ireland
  • Mr. Michael Foley – Program Manager, PPI Ignite Office, TCD
  • Ms. Clodagh O’Donovan – Research Assistant, PPI Ignite Office, TCD
  • Prof. Nicholas Johnson – Associate Professor of Drama, School of Creative Arts, TCD
  • Mr. Kilian Waters – Co-founder, Arcade Film Ltd.
  • Ms. Carmel Ryan – Gourmet Food Parlour

    • 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.

    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.

     

    Advisor for Marketing, Communication and Media Relations

    Karen Meenan is a self-employed entrepreneur. She worked as a brand, marketing and sales manager before opening her own retail and training consultancy in 2001. She is the co-founder of the dementia-inclusive Forget-Me-Nots choir and founder of the “Making Hay Theatre” which produces co-creative plays through dementia-inclusive intergenerational workshops. She also serves as presenter and producer of “Reminiscence on the Radio” with Near FM. She is currently working with Limelight Communications specialising in creative solutions for effective communication plans.

    “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.”

    Ambassadors