I thank the Chairman for allocating time to us today. I will begin by providing a brief overview of motor neurone disease and then I will move on to the services that we currently provide. There is no medication or treatment to halt, prevent or cure motor neurone disease. It is recognised as one of the world's rare diseases. In the majority of cases, life expectancy is between three and five years.
The symptoms of motor neurone disease are highly debilitating. What may start as a limp or a foot dragging will progress to deterioration in mobility and eventual complete loss of mobility. What may appear as a stiffness or swelling in the fingers will progress to the full loss of use of hands and arms. In the bulbar region, it affects speech and swallow, robbing the person of his or her ability to speak and resulting in non-invasive ventilation. The majority of our clients live with a combination of limb and bulbar disease.
Currently, 272 people are registered with the Irish Motor Neurone Disease Association. Despite the severity of this diagnosis, sufferers are not automatically entitled to medical card or palliative care services. In an effort to meet the needs of the motor neurone disease community, the Irish Motor Neurone Disease Association has spent the past 25 years developing specialist, individualised services in order to manage the symptoms and improve the quality of life of those affected and their families. The services are unique. They are not duplicate services offered by any other provider.
We employ the only nurse specialist facilitating the entire motor neurone disease community. She works in a remote capacity. She is crucial to delivering the best in care to persons with motor neurone disease and their families. Her work includes but is not limited to specialist care for the persons concerned and their families during home visits. She takes a palliative care approach from the outset, not just during the end stage of the disease. She is responsible for the education of GPs, other health care professionals and community teams that have been trusted with the care of people with motor neurone disease. She offers training and support to families and carers. She is also involved in the co-ordination of brain stem and nerve donation after death, which is used for research into the causes of motor neurone disease. In addition, the remote nature of the Irish Motor Neurone Disease Association nurse's work allows for care and education in the most remote parts of the country where motor neurone disease has appeared. Reaching the most isolated areas of the country has proven invaluable.
Another service we provide is the operation of a loan bank of equipment, technology and controls for those with motor neurone disease. Our members have immediate access to the loan bank. There are no waiting lists, which is crucial given that our clients are not automatically entitled to medical cards and are usually expected to live between three to five years. Equipment and technology are carefully chosen to suit the client and therefore it can be easily reused and recycled within our community.
Furthermore, the Irish Motor Neurone Disease Association is now supporting more than a quarter of its community with financial help via a home help supplement so that members may obtain additional hours of home help. We still hear about people who receive as little as one hour, or slightly more, of home help a week. That level of home help cannot support the extent of disability that motor neurone disease inflicts on a person. Our other provisions include financial support to enable access to counselling, training and development. The association also donates 5% of its annual income towards funding research at Beaumont Clinic. We currently fund the Irish Motor Neurone Disease Association research fellowship.
It is vitally important that the association is recognised for its level of expertise and the enhancement to basic health services that we provide. Our service provision is unique and by no means a duplication of services on offer from the Health Service Executive. Financing these services is always an issue but the Irish Motor Neurone Disease Association has sustained its work by appealing to its community to raise money through fundraising activities. State funding accounts for less than 25% of income. While we have managed with this self-sufficient approach in previous years, the economic crisis has impacted on the ability of our supporters to raise funds. We have had to become increasingly dependent on our State income. We have absorbed the 2009 cuts but further cuts to our revenue are a major concern. The current revenue awarded to the Irish Motor Neurone Disease Association amounts to less than €20,000 per month. The association has not received any increase to its revenue since 2005.
In light of our funding situation and the quality of services offered, we would appeal any decision to impose further cuts on the association. We would recommend that there are no further cuts to the annual grant aid for the Irish Motor Neurone Disease Association. Any such cut would result in severe disruption to basic services and increased risk to persons with motor neurone disease and their carers. We would recommend the provision of medical cards for those with motor neurone disease. They should be granted according to a person's medical need rather than be based on a means test. Future funding should be made available to enhance the key existing service of the specialist nurse. That would help us to provide care to families with motor neurone disease throughout the country and avoid the risk of exhausting our current nurse. The association would also ask the committee to consider funding of carers' income supports, housing and vehicle adaptations and the preservation of social welfare payments as they have an additional impact on families living with motor neurone disease.