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csgam

New member
Joined
Jun 3, 2010
Messages
5
Reason
PALS
Diagnosis
05/2010
Country
US
State
CA
City
Agoura Hills
Have a new blog post if anyone is interested.

It's extremely difficult as a patient to watch the limited progress made against ALS by the medical community. Almost 150 years since the disease was identified and only one lousy, very expensive medication (Riluzole) that may extend life only 60-90 days on average in some patients. If you believe the past predicts the future, we are doomed. If you think linearly and look at the experts constant reference to how puzzling and difficult ALS is to understand, you become disheartened. If you understand it takes 12-15 years on average for a drug to make it from concept to shelf, that is many times the average ALS patients lifespan after diagnosis.

Although an individual like a scientist or a researcher is an expert in his or her field of ALS Research, that does not mean they are an expert at technology-based forecasting. The common wisdom is to think linearly, and assume the pace of development and change will continue based on his or her expert knowledge of what is known "today." I am not a scientist, but am a technologist and a mathematician. Also like to explore new ways of thinking and challenge conventional wisdom. Thankfully in the past, some overcame the linear thinking that the world was flat, that blood letting was a great medical treatment, or even that women should not be treated equal or even vote. I believe that technology is just beginning to revolutionize modern medicine, and we are at the cusp of some major breakthroughs in the months and year to come. There is now almost monthly news of new discoveries, advances in Stem Cell research, promising new clinical trials, a recent FDA approval of the Diaphragmatic Pacer, an attempt to better mine data via the new ALS CDC Registry, etc. All cause for hope.

Continue reading at ALS Everyday Living: One Man's Opinion on Technology Transforming ALS Research - Great Things to Come..
 
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