ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, May 3, 2009

It's A Small, Small World

We often focus our ALS advocacy attention on the U.S. ALS, motor neuron disease, occurs worldwide.

Here's an interesting perspective from a person with ALS in the Irish Times.
http://www.irishtimes.com/newspaper/health/2009/0428/1224245505820.html

Some things are the same as in the U.S.
It is difficult to live with the fact that nothing can be done for me or other people with motor neurone disease. Even those with cancer can fight it and there is a chance you might get over it. The hardest thing is to feel you are fading away.

and a few things are different
Currently, the State’s position is to exclude the MND community from medical card access because they are expected to die. Furthermore, this view appears to assume that managing MND is done over a shorter period of time and, therefore, there is less expense involved in a short-term illness – this is most certainly not the case.



MND Global Awareness Day will be June 21st. Perhaps it's time for all countries to unite on June 21 and make the world aware that this is a global problem that needs a global solution.

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