I read a e-mail last week that asked us to check out John Kanzius site www.Kanziuscancerresearch.com, so I did cause I have been trying to find out what had happened with him after his 60min interview, I had found the site but did nothing about it. This time I read everything I could, flipping to each site. If this comes about it is for eveyone, not just one kind of cancer, all kinds plus other problems, and how it is given is nothing compaired to what we all have gone through. It is two years ahead of what I thought it would be when I listened to 60 minutes--after I listened to it and read everything I sent a donation and e-mailed everyone in my e-mail address book. If this thing goes the word cancer would not make you sick evertime you heard it. Please take the time to check this out-send what ever you can-contact anyone in the articals that you can and send the site with your true feeling about what is going on in your life to everyone in your addressbooks-lets bomb bard their site with as much as we can, and then lets do it again in one month. Those that didn't take the time to read whats going on might take the time when you send it again. Please I am tired of watching my husband, family members, and friends die a horrable death of something we all know could be stopped. Maybe if we keep pushing we could get the human triles moved up even more. Thanks Shirley Bing
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What could we raise
- By bing
- Posted December 25, 2008 at 1:47 am · 42 replies
- In Family members and caregivers
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42 replies
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- By birdss
- Posted February 9, 2009 at 10:42 am
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Wennot - My wife and I just sent $100, and are hoping that others will do the same at whatwever level they can afford. $1.00 is $1.00 closer than before it was sent. I think this thing is the real McCoy.
Steven
- By birdss
- Posted February 9, 2009 at 10:36 am
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Hi bing - I wanted to comment about your comment about LDN. In fact, I have been meaning to post something about it but have so far only been advocating the Kanzius research. I am usign LDN now for 4 weeks. Will it work for me? Don't know. It takes at least 6 months in most cases to see results (halt in disease progression). I believe that it has merit, and since it has no side effects, I say why not try it. I shared information from the website (LDNINFO.ORG) with my Oncologist, and asked her to write the prescription. She did with some reservation. But she saw that it would not interact in a negative way with the drugs I was on, and agreed to let me use it. I have talked with others around the globe using it and it works for some, and not for others. I am going to give it a shot. As I told my Onco, "What do I have to lose"?
My Onco worte the presecription, I contacted a compoinding pharmacin in Denver near where I live, and they overnight shipped my 30 day supply. Had a little trouble sleeping after about 1:30 in the morning, but that seems to be passing now. If you want to discuss further with me, please feel free.
Steven
- By mommyof5and1hubby
- Posted January 9, 2009 at 5:48 pm
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Thanks for the comments bing & amy, I am not leaving LCA. Just this discussion. I just feel like it turned into a rules thing, and I am more interested in research and support. No Worries. And I am certainly not mad at anyone. Dont loose sleep on me. Cheers
- By bing
- Posted January 9, 2009 at 3:29 pm
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mommyof 5 please don't stop the site, I tryly didn't start this up to have anyone stop the site. I love reading all your comments, and I love the ones that are willing to step out of their comfort zone. Being able to voice is one very important thing in our lives being caregivers or the patient. I did say that I donated, I did say I was e-mailing all "my address book" but I didn't want to slow the progress of this site down. Everyone is to important. I do feel very strongly about what this whole thing was started about, and I will handle that in other ways. When we get on a chat line, its to chat. I never think about guide lines when I'm talking. I just want to talk and get things out. There is enough hurting going on in this group with out the hurt coming from this group. If you want to talk to me send me an e-mail shirbing@digis.com but mommy please don't stop your chats here. I feel so sick that this turned into a problem. One that Amy would stop taking the e-mails and that mommy would stop sending. I love hearing Steph and Babs. I hope more than anything we find all kinds of healing on this site and next time I will not put any word in my chat that will involve the word donations. I will put my e-mail site for that. I am so sorry. shirley
- By amymaura
- Posted January 9, 2009 at 2:07 pm
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In defense of Jazzbo's comment, I understand and agree with what he's saying. There have been numerous news articles by cancer survivors being scammed by people who promise cures. There was an article in either US News and World Report or Newsweek quite some time ago about how unfortunately, people who are dealing with serious illness are often scammed out of life savings by the people who prey on their vulnerability. It's a sad sad state of the world we live in, and we have to protect ourselves. But when we feel desperate for our loved ones, we sometimes go to extreme measures, because what have we got to lose. But sometimes there is actually a lot to lose. I'm not saying that the Kanzius research is this way. Just echoing Jazzbo's thoughts in a general sense.
And just to repeat, everyone is absolutely allowed to freely discuss research that sounds promising. After all, that's really what the Lung Cancer in the News section is about. Mommyof5 is absolutely right, we all want to know about promising research. So keep posting the news stories that people might want to know about!
Amy
LCA
- By mommyof5and1hubby
- Posted January 9, 2009 at 11:28 am
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Wow, just a few posts for thought. I understand the "rules" and I don’t believe that anyone is trying to get money sent to them directly here. I have read every post, and I don’t get the feeling there is a "shi-ster" here. Most of us are intelligent people, and aren’t going to give money to some crazy organization. And this particular research was featured on a major television news organization. Not in some back woods bizarre small “blood letting” saves us all organization. In fact the person who started this discussion has nothing to do with the organization at all. But it informed me to some research that I had never heard of, and opened my eyes into something that I “MAY” be interested in sending a donation to. I also believe that during this economy, most people are very careful about where they put their money.
I was appalled that one post said, “I, too, know of particular promising research but I think of this site's mission as support not solicitation” Yowsa! That scares me. I want to know about all of the potential research. That doesn’t mean that I will donate to all of them. But it opens up the ideas. This discussion of “What could we raise” peaked my interest specifically because of the title. And at the very least it did raise my awareness.
To the person who mentioned some users of this site, using the heart over the brain. I am sad about that comment. Although I don’t believe that there is malice behind the comment. People need something to believe in. During the most devastating time in their lives, they need hope. Families need hope. Comments like that make me very sad. Because it feels like a judgment of the choices and thoughts that I have. I am very sad, I cry my eyes out every day. But I still have a brain. My heart is breaking, and yet I can still function.
LCA does seems like a deserving organization. And its employee’s nice people. But just as one of the previous posts mentioned, there are a lot of crazy’s on the internet. And LCA is on the internet! And there is an agenda here as well. Although I believe a good agenda, still an agenda. I don’t believe that at anytime this discussion was a shameless promotion. I don’t believe that it violated any rules, or had any ulterior motive. Take this post as you will, I will not be back. Not because I am mad at anyone. But because it does not further my agenda to disagree. I respect all the opinions on this site. But I respectfully disagree with some of the above. And I pray that my Dad will survive his terminal lung cancer.
My Thanks to all. My best wishes, and prayers go out to all those who suffer with this completly underfunded cancer. I pray for the cure soon!
- By stephanie410
- Posted January 9, 2009 at 10:43 am
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OK, point taken. As I mentioned, I'm a "rulesy" person, so I will do what I'm told and obviously missed that in the fine print. (And don't worry, Amy...no eye rolling on my part...I agree that the internet is a tricky medium...) I just needed to hear some more insight into how that discussion was a problem.
And babs, you didn't hit a nerve with your response (in fact, I hadn't yet seen it when I wrote), just examining the issue. I see lots of grey here. But if you know of other worthy research that perhaps I hadn't heard about (sounds like you have some passions), email me privately when you get a chance! I want to learn and research all I can.
Thanks, everybody.
--Stephanie
- By jazzbo
- Posted January 9, 2009 at 10:01 am
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Hi everyone, Please please don't take this personally. We should have all read the "rules" before we started posting.
Amy and Beth are trying to let us know that the site has rules and these are them pertaining to fund raising. Fund raising isn't exchange of information. Its solicitation. As I understand it , it is OK to put info out there pertaining to a cause. Just not to seek money. I could be corrected but I think you can put out the info on here that a group or orginization is doing this or that and they accept donations. You can't activley seek money. The problem comes when someone tries to ask for donations we don't know where the money goes. But we need to research our donations ourselves. There are a lot of older people on this site and people reaching for any hope and in this position people tend to think with thier heart not their head.
My opinion, John
- By Ramona
- Posted January 8, 2009 at 11:11 pm
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Steph,
Thanks for taking the time for your well thought out and articulate comments. I enjoyed reading your post pretty much agree.
- By amymaura
- Posted January 8, 2009 at 5:41 pm
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Hi everyone,
Just to be clear, there is a difference between sharing information and encouraging fundraising. It's not so much about who gets promoted over another, but when people say "please donate money to this or that", it could easily spiral into something that isn't meant for this website.
As an example, Lung Cancer Alliance - my employer, in the spirit of transparency for those who don't know - is the sponsor of this site, generously hosted for us FOR FREE by Inspire. I have tried to be VERY careful in never soliciting donations to LCA, and Inspire has never asked for funds either. I can't speak for Inspire, but for me there are several reasons for that: 1) it's against the community rules, and 2) it's not the reason we host the site, and 3) it would definitely show bias that we don't feel is necessary or appropriate.
There have been postings in the past for organizational fundraisers that have gone untouched. This is a tricky one, and at times we approach these things on a case by case basis. Usually it's a one time post with no discussion, and no one saying "I'm donating, you should to." They are often for organizations that we know and work closely with.
In this particular post, what was different was that it started to take on a "let's organize and do fundraising for this guy" which starts to move it past "here's information about the Race for Breath" that supports X organization.
The discussion of organizations that can save our mothers, fathers, and other loved ones can and should go on. It is the discussion of how to raise funds for these organizations that shouldn't (at least not here). But absolutely feel free to discuss organizations that have been helpful to you all.
Steph - no rolling eyes here! But I also want to remind everyone that the internet is a very tricky place, and every day there are stories of people being wooed into thinking they've got a friend, and it turns out they don't. I think everyone here means well, but you just don't know who is out there lurking and waiting for the right minute to register as a member and post something for their own gain, and not for the gain of the community.
Hope that's not too long and confusing. I feel like everyone has made very valid points, and they all deserve addressing. I would again encourage everyone to review the rules and terms of the community if you are confused, and please don't hesitate to contact me or Beth if you ever have questions. Inspire created these rules based on a whole lot of experience with these communities, so I have no doubt that there is a good reason for every single one of them.
Amy
LCA
- By TeamInspire
- Posted January 8, 2009 at 3:45 pm
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Hello Stephanie,
The main issue is that we have to draw the line somewhere. There are over 5,000 people in the LCA group, if we allowed each of them to post a solicitation for their favorite group or cause then the site would quickly become a bunch of solicitations. We can't really pick & choose so we say "none."
It's not always easy, and we're not saying that all these causes aren't worthwhile. We want the exchange of ideas and such to continue without the group becoming a place where everyone solicits donations for their favorite cause/foundation/research/etc.
Hope this helps!
Beth, TeamInspire
- By babs
- Posted January 8, 2009 at 2:07 pm
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Dear Stephanie, I guess I hit a nerve with my response. This is why I hesitate to post much anymore. I have the utmost respect for you and you know I have been touched by your story. But I still agree with Amy. I, too, know of particular promising research but I think of this site's mission as support not solicitation. But, I guess ideas of what constitutes support will be different for each of us. Babs
- By stephanie410
- Posted January 8, 2009 at 1:12 pm
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Isn't there a difference between "friends" sharing a viewpoint and shameless promotion or unfair pressure by bullies? From the personalities on this site, it's a little hard for me to believe that anyone would feel pushed in a particular direction--have you noticed how feisty some of my cohorts are?? : ) As far as I can tell, most of these folks make their OWN decisions...
And while it may not be LCA's role to play a part in that promotion (after all, it's one of the extremely worthy organizations also seeking contributions to do its work), I don't see the problem in individuals doing it. It's just an opinion. That being said, I certainly don't want to direct potential funding away from LCA, but I just like to spread the wealth around--there are a handful of great organizations out there (and some not so great, on which we also like to comment!).
If I say that I'm having a particular treatment and that someone should look into it, am I unfairly pressuring that person in a way that is detrimental to their health, or can I trust that they will use that information responsibly in a way that may or may not open options for them?
How do we share information with each other in a way that allows us to make the decisions about who we want to support? I'm sure many of us support a number of organizations. How do we educate on the handful of awesome organizations and advocate for supporting them? And is it really a problem to be biased? Aren't we all? (And shouldn't we be, especially with the competition by other organizations that are less than supportive to our cause?) I know that if didn't have this site and its free dialogue, that I would still be floating by blindly believing some of these big organizations that pretend to support us, then go big on pink.
This raises some important questions about information sharing and our roles on this site, as individuals. I am not trying to stir the pot or be resistant...and I'm a rule follower by nature, so I'm not trying to bring a revolt. But one of the things I love most about this site is the honest sharing and hearing the experiences and OPINIONS of people on every facet imaginable in this fight.
I hope the folks at LCA aren't rolling their eyes at me right now for belaboring this, because I have such respect and admiration for everyone there... I don't mean to be argumentative. But maybe this part of the policy could be re-examined a bit... (?)
Thanks for listening.
--Steph
- By babs
- Posted January 8, 2009 at 1:08 pm
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I think Amy is right. We are not medical scientists and we are all desperate and hopeful for a cure.We can easily be convinced to contribute to a specific cancer research. There are many "cures" being investigated out there in many research institutions that are just as worthy as this particular one. We just may not have the knowlege about them. Maybe because they haven't spent the time seeking publicity. They maybe too busy with their research. How do we decide whose motives are altruistic? Babs
- By bing
- Posted January 8, 2009 at 1:39 am
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I agree but we do have a good support here and don't want to lose it and that might happen if we don't stick to their rules. I hope that I didn't stop anyone from giving to any group that they would want to that was not my intent, at the time I was so excited about what was going on then I wanted everone to be. sometimes we need that extra jump start to keep our hopes and dreams up, and I still am excited.
- By mommyof5and1hubby
- Posted January 7, 2009 at 4:16 pm
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I hope that the push to keep ANY research towards a cure will continue. And that no matter what anyone says about trying to get donations, we push on. I personally dont see myself sending a dime to any government organization at all. State and Local organizations have proved that they do not, DO NOT look at Lung Cancer the same as other cancers. And time is running out for my family!!! & many others...
How is the exchange in information happening when you wont allow someone to discuss the name of an organization that may save my fathers life? Donate or not! & I made sure not to mention the name in the reply, so that you would not delete it.
I appreciate all the exchanges that go on here. But I really am disappointed with "I believe" is the moderators reply...
- By bing
- Posted January 6, 2009 at 10:19 pm
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I guess I'm not sure what you mean by exchange of information. I think if its what I think, you better ask the site people or amymaura she know the sites rules.
- By Ramona
- Posted January 6, 2009 at 7:44 am
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It seems to me the exchange of information can still continue.
- By bing
- Posted January 5, 2009 at 11:31 pm
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Thanks for the information, I have most of it but its nice to have as many web site as we can. Thanks
- By amymaura
- Posted January 5, 2009 at 5:56 pm
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Hi Bing,
No offense taken. Your posting of the information is not a problem at all. The exchange of information is a major goal of this community. But once people start soliciting other people to make donations, it starts to get tricky. That's why we have the community guidelines and terms of use.
We've all heard about Mr. Kanzius's research and we are all hoping and praying that it turns out to be a huge breakthrough. He has backing from legitimate research institutions. But at the same time, if we allow for posting of solicitations for donations to his research, we end up on a slippery slope of having to allow for the posting of solicitations for other research, some of which has not had the same backing his research has had.
I don't doubt that Mr. Kanzius's research would move faster if it got more funding. ALL research would move faster if it got more funding. Please check out the ways you can push for more federal funding through our website: http://capwiz.com/lungcanceralliance/home. Once congress is back in session, we will start pushing the Lung Cancer Mortality Reduction Act again. Right now, you can send a letter to Pres. Elect Obama through that link to tell him what you think! Also, check in with one of the other great lung cancer organizations that fund research and see what you can do for them. We have a list of lung cancer related organizations on our website: http://www.lungcanceralliance.org/facing/resources.html . Join our e-alerts list to find out how you can push the lung cancer agenda forward in your area, and what other people are doing too: http://www.lungcanceralliance.org/involved/list.html
I encourage everyone to donate time, money and any effort you feel you can to getting us to a day when we don't have to see and hear these awful stories day after day. There are plenty of ways to do it. We just can't use this site to solicit funds for everyone and everything that looks like it might hold promise.
Hope that helps!
Amy
LCA
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