Monday, June 20, 2016

What are the results from that very successful campaign to cure ALS last summer? You know the bucket challenge where it seems that just about everyone was willing to dump a bucket of ice over their head. Sure millions of dollars were raised but where did it go? People are still dying from the still incurable disease. The Federal Drug Administration is slop in approving the few new available drugs to treat the suffering patients. Congress is too busy doing nothing to help out here. Where is the public outrage with their empty  bucket’s’ now?
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ALS is a fatal neurological disease  that seems to attack people who are athletes and in perfect health. Lou Gehrig,  the famous baseball player was the first to give the problem a real spotlight in 1939. Then the disease was ignored for 75 years. Maybe the bucket challenge gave people more spotlight than the disease but it also raised hundreds of millions of dollars this time in the process. The disease attacks very normal people in a very subtle way.  It starts in the hands where you begin to notice that simple things are hard to do like picking small things up or holding on to things. Paralysis shows it’s ugly face.  The disease moves quickly to destroy your body and it is still difficult to find any kind of treatment.
It is more like just getting a caregiver to assist with the bathroom, cutting food, feeding yourself, walking and even talking. Before you know it all your muscles and systems shut down until you don’t even have the energy to breath. No one wants to loose your independence while your thinking process is still quite normal. No one wants to be trapped in their own failing body. No matter how horrible this is people do think there can be a cure someday. ALS researchers are fighting the clock trying to find an effective treatment. There is the ALS Therapy Development Institute in Cambridge, Massachusetts is a place that solely focuses on this disease.
The disease is unrelenting muscle loss from all over your body. Your brain stops telling your muscles to function. There is NO EFFECTIVE TREATMENT TOWARDS A CURE TODAY. THIS HIGHLY SPECIALIZED PLACE RECEIVED ONLY 4 OUT OF THE $220 MILLION DOLLARS RAISED FROM THE BUCKET CHALLENGE.
Where did the money go?
The place immediately spent their meager 4 million into developing their most promising drugs. A lot of their drug research is put into slowing the disease so patients can at least have a longer more rewarding life. They tested more than 300 various drugs. Those that are ready for clinical trials are being halted by the slowness of the FDA to approve the process. Patients are lined up willing to try anything to be the human research mice just to try something since there is still nothing out there treating the disease. Many suffering from ALS are going abroad to seek treatment from other countries.
What  is the harm in releasing a drug that sufferers are willing to take a chance with? NP001, Neuraltus Pharmaceuticals, Inc. is a promising drug that is not allowed to sell it’s product in America to help Americans. They need money to continue their research and in America they are not allowed to charge for unapproved drugs.
If this company had some of that money, they could be giving out the drug for free!!!

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