RIGHT TO THRIVE
If you live in the UK, please write to your Member of Parliament and ask them to contact and support Kevin Foster (MP for Torbay) who is championing the Right to Thrive campaign at Westminster, and also ask your MP to raise the issue with Steve Brine MP, the Minister responsible for major diseases.
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For additional information about RIGHT TO THRIVE, please click on the links below:
RIGHT TO THRIVE – Access, Choice and Equality (ACE)
As you may know, Motor Neurone Disease (MND) is the cruellest of all diseases; it attacks the nerves that control movement, leaving those affected unable to walk, talk, eat and ultimately to breathe. There is a 1 in 300 chance of developing the disease in your lifetime and it usually progresses rapidly with no effective treatment or cure.
One third of people with MND lose their life within a year and over half within two years of diagnosis. Most people with MND believe their only option is to accept that this is their lot.
But a growing band of inspiring pioneers with MND refuse to bow down in the face of this long-established version of reality. Instead, their defiant message of hope is that thanks to emerging technological breakthroughs anyone with MND can these days claim the Right to Thrive. They choose not only to try to stay alive for as long as it takes until there is a cure – they choose to THRIVE.
This dream has recently become attainable as a result of cutting-edge Hi-Tech such as robotics, own-voice speech synthesis, and Virtual Reality. In addition to these, however, to survive with MND long-term typically needs an operation called a Tracheostomy that lets a portable device breathe for you, as well as a Cough-Assist machine to clear your lungs of phlegm.
At present, it is a local decision for a Tracheostomy and Cough Assist to be made available to you if you have MND. The most recent data show that less than 1% of people with MND in the UK receive this life-saving combination; in Japan it is over 30%.
Everyone with MND deserves the same right of access to the life-sustaining Tracheostomy and Cough Assist they may need if they choose to fight for a fulfilling life despite their diagnosis. But some people, having chosen to live and thus the Right to Thrive, are being denied access and, in effect, told they must die instead – only because of where they live.
At its heart, therefore, the Right to Thrive campaign is about Access, Choice and Equality – everyone with MND deserves the same ACE treatment, not a cruel postcode lottery.
Please contact and support Kevin Foster (MP for Torbay) who is championing our Right to Thrive campaign at Westminster and also raise this issue with Steve Brine MP, the Minister responsible for major diseases. We need your help to ensure the choice of striving for a productive life of love and happiness is an option for anyone with MND claiming the Right to Thrive.