Imagine losing the ability to move your arms or legs. Imagine losing the ability to speak, swallow and eventually breathe. How would you handle telling your children that in a few months time, you won’t be able to play with them anymore? Imagine going through all this while retaining your mental alertness and capabilities. These are just some of the struggles faced by people suffering from Motor Neurone Disease.
So what is Motor Neurone Disease (MND)?
Motor Neurone Disease is the name given to a group of terminal diseases in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow, undergo degeneration and die.
Motor function is controlled by the upper motor neurones in the brain that descend to the spinal cord; these neurones activate lower motor neurones. The lower motor neurones exit the spinal cord and directly activate muscles. With no nerves to activate them, muscles gradually weaken and waste. MND can affect a person’s ability to walk, speak, swallow and breathe.
A cure is yet to be found, there is no effective treatment and it can strike anyone at any time. The average life expectancy of a person diagnosed with MND is 27 months.
What is the MND and Me Foundation?
The MND and Me Foundation Limited is a not for profit organisation that was formed to raise awareness of MND and its' impact in the community.
The MND and Me Foundation supports people and their families living with motor neurone disease in Queensland. The Foundation delivers support programs and funds research into treatments and a cure for MND.
The MND and Me Foundation was established by Scott Sullivan, a husband and father of two children, who was diagnosed with MND in 2010 at the age of 38. Scott sadly died in April 2014.
The reason they are running the New York Marathon?
The MND and Me Foundation provides support for an estimated 300 people in Queensland living with MND. A key element of this support is to fund a “Regional Adviser” service that assists all Queenslanders impacted by MND.
A Regional Adviser is responsible for providing a person centred, responsive and timely service that includes assessing the care needs of people living with MND, making appropriate referrals, assisting people living with MND to negotiate the service system and acting as an interface with health professionals and community services. They are out in the community ensuring that the generic service systems of health, disability and aged care are able to meet the needs of people living with MND, with the aim to deliver quality of life.
At the moment there are many Queenslanders without access to this critical service, especially those in regional Queensland. Due to the often rapid progression of the disease the Regional Adviser plays such a key role in ensuring the support provided keeps up with the pace of the progression.
With the funds raised from running the New York Marathon it is the aim to employ more Regional Advisers to ensure people with MND have access to services that meet their needs.