Old 10-29-2013, 11:44 PM #1
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Default 1/6/2014 Protests are coming

There are a group of Pals trying to organize protests throughout all of the United States on 1/6/2014. We believe these protests are necessary to achieve many different objectives and goals which are: Expose the incompetency of researchers in the field, Expose and trace where all this supposed research money is going, to get drugs into the hands of Pals, to streamline the ridiculous FDA process, To expose the medical discrimination that we face as a group being told we are "terminal" when a vent can add years and or decades to our lives, To expose that Rilutek was a garbage drug that should have never made it to the market, and to up rise for our community. WE WILL not get an effective treatment for this disease without an aggressive protest. HIV became a chronic manageable disease due to protest and outrage from the gay community. Pals/Cals have sat around too long and put up with the incompetent industry, clinics, and the FDA. There will be pre planned places of protest in every state if this is coordinated correctly. DO NOT complain about the system if your not willing to change it.
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Old 10-30-2013, 10:11 AM #2
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Default Re: 1/6/2014 Protests are coming

I am with you all the way.

What especially concerns me is medical discrimination and the slowness of the FDA approval. The first words that come out of Doctor's mouth about ALS is that you have 2 to 3 years to live.
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Old 10-30-2013, 12:54 PM #3
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Default Re: 1/6/2014 Protests are coming

Who is leading/organizing these 'protests'?
What information is available to the masses about the time(s), location(s), agenda(s)?
Or was this just the 'tease' to keep us all listening?
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Old 10-30-2013, 03:17 PM #4
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Default Re: 1/6/2014 Protests are coming

Jeff, a group of Pals over at ALSTDI is trying to get everyone who is a Pal/Cal to organize protests throughout the United States. There will be select centers chosen in each state throughout the country. This is not a tease in any manner, rather I am personally working on an emergency petition to the FDA for access to much needed drugs. I am not a bad or malicious person, but I am fed up with the system. I came to this forum to spread the news and for the purposes of explaining why I do believe some Pals are brainwashed with the system. My goal is not to offend anyone, but to get things moving for my generation of Pals, and all Pals for that matter. It is time that we speak up in numbers. We are currently organizing the times, place, and areas designed for the protest. I am not a leader as it is a community operation for all those who are involved. I think ultimately these issues need to make the National News. We have NP001 that should be on the market, MCI-186, CK, and anything deemed safe in Phase 1 should be offered on a compassionate use basis to Pals.

@ColTravis, you are correct as we are completely discriminated against. If you want to join a site that will help you more than this one I suggest ALSTDI as there is much more information about combating this disease. We are NO more terminal than a vent dependent quad, and can indeed lives many years if not decades beyond the 2-3 year diagnosis. Please do not be suckered into thinking the medical establishment cares one bit about Pals and our plight.
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Old 10-30-2013, 11:34 PM #5
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Default Re: 1/6/2014 Protests are coming

definitely think neuros should stop saying you have 2-5 years. there are many things you can do to extend life expectancy
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Old 10-31-2013, 02:28 AM #6
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Default Re: 1/6/2014 Protests are coming

FA10 this is a much better approach than the other thread. I do not have ALS, but and the wife and care giver of someone who has. I agree that PALS & CALS should speak up, and be heard. We had to go through a very difficult appointment with my husbands ALS doctor, who basically said to forget about the DSP, and that going onto a vent will definitely extend his life, but at what cost. Canada does not advocate the use of DSPs in the use of ALS as it is a disease that is progressive, where a high quadriplegia is not. I agree with your statement that the ability to feel and communicate the development of a pressure sore is an advantage, thus will decrease some of the complications of this disease.

My husband and I have a unique situation, as he is an American veteran living in Canada, which means that we may be able to go to Seattle and have a DSP implanted if he qualifies. He has not decided whether he will choose to go on a ventilator as yet, and this could possibly give him time to be more sure. There is equipment in the US that is not available in Canada, but thankfully the VA has been very good to us.

I must now tell you that I am a member of the medical community and it is hard to hear that "we don't care." Maybe you wouldn't consider an RN as someone in that field, but I do. I have given my life to helping people, and would give my right arm if it meant that my husband would not die of this horrible disease. I spend every spare minute that I have researching what I can to help my husband. I know that there are abuses in spending money that is collected for research, as there are abuses in money given for aiding orphans in other countries, or taxes given to the government. There seems to be very little accountability to those who are perpetrating the mishandling of money, all around the world. What is the answer? I am not sure, but I would happily stand up and be heard.

The problem with dealing with certain diseases IS money. Who pays for the research? The people who develop drugs are not doing it out of the goodness of their hearts, it is for profit. There is not much money to be made on a drug for a rare disease, so then the brunt of the money that goes into research for rare diseases must come from the government, who gets it, by taxing the people. The price of technology is rising exponentially and may not be self sustaining. Do I like that? Not a chance! I have lost a brother to cancer, and actually facilitated a chemotherapy program in the hospital that I worked in, so that I could be involved in the system, and be there to learn. I went to the conference held for the oncology doctors working in the field. I found that they were very dedicated, and did care about curing cancer. I was able to contact the head oncologist for our province anytime I wanted, and he was willing to come to our hospital to address issues that I had with our program.

This reply is way too long, but I want to communicate that medical people are just as vulnerable to the diseases of man, so it is contrary to their best interest to waste their time. But there is always people out there that are ready to exploit something if it means monetary gain, and I lay that squarely on the pharmaceutical companies, and some fund raising executives.

Paulette
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Old 11-01-2013, 03:07 PM #7
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Default Re: 1/6/2014 Protests are coming

Paulette, I agree with you that it all comes down to big pharma and not wanted to spend the money for a disease that does not effect a wide range of people. However, I do believe researchers have completely dropped the ball with ALS. Anybody with half a brain knows or should know that the single drug trials, which have been failure for the past 20 years are not the correct way to approach this disease. We know based on theory that ALS involves about 5 or so pathways: too much glutamate, mitochondrial dysfunction, free radical ros species, problems with the neuromuscular junction, and issues with protein aggregation and misfolding. Clinical trials will continue to fail for this disease, and it is a shame because in my opinion and based on personal DIY experimentation there are drugs out there right now to help with this disease. Please at least check out ALSTDI, as it is much more technical and you may be able to help your husband if you do. I truly do think it is ridiculous that we all have to go through the burdens that we do. Regards,
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Old 11-01-2013, 11:02 PM #8
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Default Re: 1/6/2014 Protests are coming

I have been on that forum under the same name. We have tried several of the things, and I feel have minimized slightly some of the symptoms. You are exactly correct when you say that there a multiple things happening with ALS, and that is exactly why it is so difficult to deal with. There are some amazingly intelligent people on ALSTDI, and many brilliant people who have made it their lives work, and they haven't found a cure.
But I do believe there is a reason to be careful about new treatment modalities. Yes, many are willing to risk their remaining life to try them, but I think it is their desperation that make them feel that way.
You have said that you are willing to be ventilated, as it could keep you alive for 20-30 years. So a drug, or treatment comes up that seems to be promising, by all their statistics. You do it, but it causes spine or brain tumors, and now you have to have surgery to deal with that, but you are told you are a poor surgical risk. You die 3 month later, after seizures and horrible pain.
Statistics can be fixed, and the good things touted but the side effects minimized. I have actually seen this in action, and watched some unfortunate people die horrible deaths because the research has been pushed through.
I asked one woman who had been treated for leukemia with a bone marrow transplant, and had developed donor graft rejection, if she would do it all over again. She said she would not, and that when they offered it to her she was so desperate that she convinced herself it would work, but now she was dying a slower more painful way.
They offered my brother a bone marrow transplant for his lymphoma, but because of what she had told me, I told him that he should not consider it. I had heard of another treatment at the oncology conference that had just past trials, and suggested it to him. The clinic that was treating him did not use it, but were supportive of me taking him to a different clinic that did. It bought him 3 years, of some the best years he had had since his diagnosis. Unfortunately, when his lymphoma he didn't tell me for a time until he had to start chemo that had failed already once before. I knew of another treatment, suggested it to his oncologist but he had missed the window. He died 3 months later. The drug I had suggested the last time turned out to be extremely successful, but sometimes you have doctors that don't keep up.
It should be said that bone marrow treatments have become much safer, after further work.
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