Every parent deals differently with the loss of a child, my wife and I
are about as far apart as can be in how we deal with Glenn's death. So why am I bringing this all up after 2 years ? We'll, I owe a debt of gratitude to a lot of people on this planet for what was done for my family. Everyone in this community knows better than I what can happen when people come together. I think I came up with / evolved into a way to repay family, friends, a community and frankly, a good chunk of the planet earth if things work out the way I anticipate. This is my way of dealing with Glenn's death.
are about as far apart as can be in how we deal with Glenn's death. So why am I bringing this all up after 2 years ? We'll, I owe a debt of gratitude to a lot of people on this planet for what was done for my family. Everyone in this community knows better than I what can happen when people come together. I think I came up with / evolved into a way to repay family, friends, a community and frankly, a good chunk of the planet earth if things work out the way I anticipate. This is my way of dealing with Glenn's death.
Two months after Glenn passed, I was a bit annoyed (understatement)
about how much time I spent researching ways to keep him alive and finding virtually nothing I could sink my teeth into. In particular, Clinical Trial Results. Here's how it works for all diseases, not just cancer. After your treating doctor has gone through their entire menu of protocol's and no success is on the horizon for keeping you alive, you're then directed to experimental treatments which can all be found on the governments Clinical Trials website. Its maintained by the National Institute of Health, keep that in mind as you continue reading.
about how much time I spent researching ways to keep him alive and finding virtually nothing I could sink my teeth into. In particular, Clinical Trial Results. Here's how it works for all diseases, not just cancer. After your treating doctor has gone through their entire menu of protocol's and no success is on the horizon for keeping you alive, you're then directed to experimental treatments which can all be found on the governments Clinical Trials website. Its maintained by the National Institute of Health, keep that in mind as you continue reading.
I spent hours on that website going through thousands of potential experimental treatments. Curiously, every time I clicked on the "Results" tab, I received the same one line message. "No Results Posted". The significance of that one line didn't occur to me until two months after Glenn passed. I decided to see how many trials had "No Results Posted". So I downloaded almost 38,000 Clinical Trial Records. Gave it a relatively quick sort and discovered that 86% had "No Results Posted". It was a little too much too soon so I set it aside. Jason from the patch called me about 10 months later and inquired about my little discovery. I told him I put it aside but since he called, I'll have another look.
I did a second download, this time 41,199 records, I methodically removed everything I wasn't interested in and many misclassified studies. That took 1 month, I finally got down to what I wanted, Interventional Trials where something was introduced into the human body. That my friends is a Human Experiment. I also made sure that the clinical trial had a completion date at least 12 months earlier (that's important ). When I ran the numbers on just those trials, Guess What I Found, 83% of 34,803 Human Experiments Consisting of 1,797,089 Human Beings have "No Results Posted". According to our governments own data we currently have 1,433,320 U.S. Citizens, experimented on for just one disease ( cancer ) and absolutely NO REPORTS ABOUT WHAT HAPPENED TO THESE PEOPLE. Keep in mind, cancer treatments are usually highly toxic chemical compounds and have long term devastating side effects on the human body. Yet, not one shred of paper documenting the results of the experiments or the humans enrolled.
I took my findings to the National Institute of Health, its their responsibility to post results of clinical trial results within 12 months of their completion date.
I received a reply from the NIH through Congressman Leonard Lance's office which consisted of 2 pages of double babble none sense. Unhappy and not in the mood for a brush off, I made an appointment with Congressman Leonard Lance determined to get this fixed. Accompanied by the lovely and supportive Jenny Cavallone we made our case as clearly as possible to the Congressman. Effectively, how can anyone in the United States make an informed decision on an experimental treatment if all the results are being concealed by the sponsors of the experiments.
I received a reply from the NIH through Congressman Leonard Lance's office which consisted of 2 pages of double babble none sense. Unhappy and not in the mood for a brush off, I made an appointment with Congressman Leonard Lance determined to get this fixed. Accompanied by the lovely and supportive Jenny Cavallone we made our case as clearly as possible to the Congressman. Effectively, how can anyone in the United States make an informed decision on an experimental treatment if all the results are being concealed by the sponsors of the experiments.
He agreed and offered to send a letter to the FDA as they are charged with enforcing the regulations. His Washington DC office asked me for questions and data which I provided and the letter was sent. The answer I received from the FDA was far worse than anything I ever imagined. They clearly admit to ignoring Federal Law, they point a finger at the NIH for their incomprehensible data and actually ( In my opinion ) lied about a report done by 3 professors in the U.K. that did exactly what I did on a much larger scale and came up with the same results. All these letters are on my website, just click over to the home page, their all under Glenn's picture. Some people find my replies entertaining, I admit I'm as smooth as a cactus.
Since I don't give up, I kept the pressure on and received an email from Congressman Lance's Office this past November with a Wall Street Journal Article attached to it. The Secretary of Health and Human Services effectively ordering the Director of the NIH go get results. They also announced the opening of a "Notice of Proposed Rulemaking" to Public Comment. NOW I GET TO THE REASON WHY YOUR ALL READING THIS. The NPRM is 116 Pages of proposed law and written as such. It took me 7 Weeks to get through it because it refers to other laws dating back to 1938. I dissected it and discovered how wonderful it sounded at face value, as I got further into it, I realized they are trying to write into law more loopholes and convenient ways to keep trial results concealed then exist in the current laws (which their not following anyway). I composed 17 pages of changes, section by section, as I fully intend to remove any possibility of keeping results of what happened to U.S. Citizens in clinical trials concealed. Its a very big and complex fight I started, Effectively, One guy in Long Valley NJ just decided to take on the U.S. Government, Federal Health and Human Services, FDA and National Institute of Health. And I intend to win for everyone in this country.
HERE IS WHERE I NEED LONG VALLY'S HELP. I need more people to add their voice to this. When you click the link below, it will take you to the instruction page. I did the best I could to make it easy to POST YOUR COMMENTS AND ATTACH MY 17 PAGE "PDF" FILE INTO THE FEDERAL REGISTER AND ADD YOUR VOICE TO THIS. IF YOU HAVE TROUBLE POSTING, CLICK THE "CONTACT US" BUTTON AT THE TOP AND ASK ME TO DO IT FOR YOU. I think I'm in a pretty commanding position to push the necessary changes through. I want every person in this country that was experimented on accounted for. I want the next set of parents trying to save their child's life to find the information that I was intentionally denied. I'm not going to allow this to continue as it has. We have seat belts in our cars saving lives because of one man, Ralph Nader, We need the ability to save our own lives by speaking up with one voice. This opportunity will never come around again in our life time. If we all don't act now, it might be our grandchildren suffering the effects of our inactions today. The public comments window closes on Feb. 19th, That's next Thursday. Please don't put this off and forget about it, Please tell anyone you can to jump on this opportunity. If everyone voices up, I promise I will not stop until its done. Actually I wouldn't stop anyway. PLEASE DO THIS NOW !
Thank you, Larry Lightner www.FIXCANCERNOW.com
HERE IS WHERE I NEED LONG VALLY'S HELP. I need more people to add their voice to this. When you click the link below, it will take you to the instruction page. I did the best I could to make it easy to POST YOUR COMMENTS AND ATTACH MY 17 PAGE "PDF" FILE INTO THE FEDERAL REGISTER AND ADD YOUR VOICE TO THIS. IF YOU HAVE TROUBLE POSTING, CLICK THE "CONTACT US" BUTTON AT THE TOP AND ASK ME TO DO IT FOR YOU. I think I'm in a pretty commanding position to push the necessary changes through. I want every person in this country that was experimented on accounted for. I want the next set of parents trying to save their child's life to find the information that I was intentionally denied. I'm not going to allow this to continue as it has. We have seat belts in our cars saving lives because of one man, Ralph Nader, We need the ability to save our own lives by speaking up with one voice. This opportunity will never come around again in our life time. If we all don't act now, it might be our grandchildren suffering the effects of our inactions today. The public comments window closes on Feb. 19th, That's next Thursday. Please don't put this off and forget about it, Please tell anyone you can to jump on this opportunity. If everyone voices up, I promise I will not stop until its done. Actually I wouldn't stop anyway. PLEASE DO THIS NOW !
Thank you, Larry Lightner www.FIXCANCERNOW.com
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