7/3/09

ALS Awareness July 4th

Big Thanks to everyone who has joined REAL ALS AWARENESS ON JULY 4TH!.

There is still time before July 4th to get more people aware that the struggle for the rights of patients to try Iplex is THE pivotal issue in saving the lives of TODAY's ALS sufferers. It's not a research-grant issue, it's not a bioscience issue...it's a civil rights issue.

Please share the issue with everyone you know. 4th of July is already designated as ALS Awareness Day throughout Major League ballbarks around the country. But so few are really aware that a drug that could save so many lives is being vigorously suppressed by the FDA. When sharing with friends, you can say something as simple as this:

"If someone dying of thirst with only moments to live drags themselves up to the only water hole in the desert, can that person ethically be blocked from the water, to perish with no hope? Would you let the FDA obstruct that person on their grounds that, although children are drinking the water and it's proven to be safe; no multi-year clinical trial has been performed on the water from this creek to measure its effectiveness on humans suffering from extreme thirst? " You or I would do everything possible to help these people, but in the real world of ALS, the FDA is turning them away to die. The analogy is right because outside of Iplex, there are zero available treatments that do anything to stop the progression of paralysis and death in ALS sufferers.

If you need ANY background information on the premise of Iplex or on the history of FDA's obstruction to patients seeking the drug; OR if you you'd like to know how you can help in the legal and legislative campaign for justice, PLEASE LET ME KNOW.

-Jess Rabourn

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