Gavin Williamson, MP for South Staffordshire, is urging local residents to sign a new Charter, supporting the rights of Motor Neurone Disease (MND) / amyotrophic lateral sclerosis (ALS) sufferers.
On 21st June 2013, organisations around the world will join together to support Global MND/ALS Awareness Day, an event which aims to raise awareness of those living with motor neurone disease, also referred to as amyotrophic lateral sclerosis, and the work of those who care for them.
The International Alliance of ALS/MND Associations is working to bring these issues to light by encouraging the global ALS/MND community to unite through the five key rights to ensure people living with the disease and their families receive the right care, in the right place, at the right time.
Five countries -Turkey, Colombia, Spain, America and Australia – will each be launching a Charter on Global MND/ALS Awareness Day, which individuals can sign to show their support for these rights.
The five rights are:
· People with MND/ALS have the right to an early diagnosis and information
· People with MND/ALS have the right to access quality care and treatments
· People with MND/ALS have the right to be treated as individuals and with dignity and respect
· People with MND/ALS have the right to maximise their quality of life
· Carers of people with MND/ALS have the right to be valued, respected, listened to and well supported
MND is a rapidly progressive, fatal disease, which robs people of their ability to walk, talk, eat and ultimately breathe. There is currently no known cause and no cure.
Gavin said: “Global MND/ALS Awareness Day is a great opportunity for people to show their support for sufferers of this condition. I urge everyone to sign the new MND/ALS Charter to help ensure that the dignity and quality of life of those with MND/ALS is forever maintained and protected.”
Liam Dwyer, who is living with MND, said: “Many people with MND die without having the right care, not having a suitable wheelchair, not having the ability to communicate. When living with MND, one month waiting for an assessment or a piece of equipment is like a year in most people's lives, especially as half of the people with MND, die within 14 months of diagnosis.”
It is hoped that these five rights are put into place across the world, ensuring that everyone living with MND/ALS and their carers have access to the right information, care and services that allow them to maximise their quality of life and be treated with dignity.
To sign the Charter and show your support for people living with MND, visit: www.mndassociation.org/mndcharter.