In 2024, the IMNDA carried out a survey amongst people living with MND to find out how the condition affects their everyday lives. 75% of people with MND who experience voice deterioration say confidence affected. 96% believe there needs to be more awareness among the general public about voice deterioration being a symptom.
As a result of this survey, the Irish Motor Neurone Disease Association (IMNDA) has announced the launch of a new awareness video campaign in collaboration with CB Media. The series of powerful and personal videos sheds light on the everyday challenges faced by people living with Motor Neurone Disease (MND) in Ireland. The project aims to raise awareness about the struggles people with MND endure and how society can offer more support and understanding.
The videos focus on the real-life personal stories of individuals living with MND; Andres Estevez Guersanik from Dublin, Eileen Butler from Co Meath, and John Daly from Dublin, who has since sadly passed away. Filmed in their own homes, these videos offer an intimate view into their lives, featuring conversations with their families and their MND nurse from the IMNDA. Each story brings to light the emotional and practical challenges the family faces daily and outlines how we can do more to support those with MND while at the same time, shows an appreciation as to how far society has already come and the support offered by many.
The video project comes in the wake of a survey conducted earlier this year by the IMNDA, which revealed the significant impact of voice deterioration—a common symptom of MND—on social interactions and quality of life. According to the survey, 75% of participants reported that losing the ability to speak clearly has affected their confidence, with almost half (47%) stating social situations can be uncomfortable and a further 42% saying they avoid social interactions altogether as a result. These findings highlight the urgent need for greater awareness and sensitivity toward people with MND.
The IMNDA hopes that this project will prompt viewers to reflect on how they can make a difference in the lives of people living with MND, from offering practical support to simply being more understanding in everyday situations.
