November 1st, 2022
We would like to thank everyone for attending our AGM & Annual Conference event on Friday 7th October in Charleville Park Hotel. The event was a great success with attendance in excess of 250 people, both online and in person.
The official business of the AGM took place first at 10.15am, this was open to members only. The Chairperson, Dr Declan MacDaid stepped down after 10 years of stellar service. Declan spoke about the wonderful years he had with IMNDA and that he would be leaving with great sadness but also great pride. He hoped that one day we would have a world free of MND.
This was followed by the appointment of newly elected Chairperson, Jonathan Healy, a broadcaster and communications consultant. The event was hosted and compered by Jonathan, who welcomed everyone to the event in person and on-line. He gave an overview of conference, outlining all the different experts that would be delivering talks on the latest research and technology.
Our CEO Lillian McGovern was next up and she spoke about the nursing service and importance of good clinical governance. This led her to talk about the appointment of a new Director of Nursing, Naomi Fitzgibbon and announce two additional nurses to the team. Lillian also spoke about the launch of the new book ‘Living with Motor Neurone Disease – A complete guide’, edited by Dr Marie Murray, along with input from professional people who gave up their time to contribute to it. She spoke about the importance of having this tool as a means of information about MND. She also spoke about the awesome year in fundraising and the ‘Climb with Charlie’ initiative that raised almost €3.4 million for IMNDA & Pieta House. As well as raising funds and raising awareness of MND, this campaign has opened up ‘The Charlie Bird Devlopment Fund’ which is hoped will deliver additional new services over the coming months. For more on Lillian’s update, please follow this link
Next up was Nick Goldup, Director of Care Improvement, & Richard Cave, Senior Speech & Language Therapist, both from the MND Association in England.
Nick Goldup talked about the voice banking initiative “I Will Always Be Me.” He talked about how technology has changed our lives and how we should be using it to help us more. He also talked about the global companies that are involved in this project such as Dell, Intel & Rolls Royce. ‘I will Always Be Me’ takes 20 minutes to record and it banks your voice as you read it. Traditionally, people have spent long periods of time recording every day phrases and now this book can do it in 20 minutes.
Richard Cave spoke about people with MND wanting to preserve their voice and keep their own identity and that “I will always be me” is built specifically with people with MND in mind. He also spoke about the ‘Relate’ app which is new and will be available in Europe soon. This app captures what the person with dysphasia or slurred speech is trying to say and transcribes it to the app so that the other person in the conversation can understand. This allows the person with dsyphagia or slurred speech to continue to speak in their own voice.
For more on Nick Goldup and Richard Cave’s presentation, please follow this link
Then we had Prof Orla Hardiman, who gave an MND Research Update for 2022. She spoke about all the different types of genes associated with MND, emphasising that C9orf72 is the most common gene in Ireland. She spoke about Precision Medicine, tailoring medical treatment to individual characteristics in patients. Orla spoke about clinical trials and the amount of money spent on bringing these drugs to trial. She spoke about the FDA granting approval for Amylyx’s ‘Relyvrio’ to treat ALS. She also spoke about the TRICALS statement around the drug Relyvrio and how people in Europe have access to it in clinical trials only. Prof Hardiman explained the importance of the scientific reasoning behind this, more can be found on this statement here. She went on to talk about all the clinical trials underway in Ireland and that RMN only commit to trials that they believe will work. She spoke about Precision ALS an Irish-led Academic Industry collaboration. For more on Professor Orla Hardiman’s presenation, please follow this link
Dr Miriam Galvin, Academic Unit of Neurology, Trinity College Dublin, delivered her presentation on “The Caregiver Experience.” She talked about the quality of life of the caregiver and explained that this is often lower than that of the patient over time. She also talked about hobbies and social activities and how they become more important for the patient and less important for the carer over time as the carer spends most of their time supporting the patient. She went on to talk about quality of life and how it is often lower in female versus male caregivers. All this information is based on a study carried out from people attending the MND clinic in Beaumont hospital. For more on Dr Miriam Galvin presentation, please follow this link.
Dr Sile Carney, Psychologist in clinical training, University of Limerick, gave a presentation on “How Will MND Affect My Family?” She talked about how to begin the conversation on Motor Neurone Disease after being diagnosed. She also talked about the person with MND being in control and that it’s up to them to decide what they want to share and who they want to share it with. Dr Carney discussed the importance of including family and friends as this can be important for both the person with MND and the caregiver themselves when looking for help. For more on Dr Sile Carney’s presenation, please follow this link
Katie Burke, Senior Speech & Language Therapist, Tallaght University Hospital & Chef Niamh Condon, Dining with Dignity spoke about “Making Modified Diets Appetising.”
Katie was up first and she spoke about the Dysphagia and how eating and drinking are affected. She spoke about the role of textured modified diets and making food safe and appetising.
Then we had Chef Niamh Condon who talked about food consistency. She explained how to prepare foods for safe and acceptable levels for people with Dysphagia. For more on Katie & Niamh’s presentations, please visit here.
We would also like to acknowledge all our silver pin recipients who have gone above and beyond to support our mission and vision and champion the Association’s work, helping us raise not only vital funds but greater awareness of MND.
We would also like to thank all our speakers for their time in delivering presentations in their area of expertise. We would especially like to thank our MND Community for attending because without their presence, this event would not have happened. See you all in 2023.