Guest DaveG Posted January 17, 2004 Share Posted January 17, 2004 One of the last issues of Cure Magazine was about lung cancer. In that article claim was made that, on the average, 480 Americans die of lung cancer every day. I want to explain briefly, what I am about to say no way lessens the impact of soldiers in Iraq, or those who served in previous conflicts. Every day we hear stories of 1 soldier being killed, or 4 soldiers being killed, etc. In the time we have been in Iraq, we have lost approximately 500 soldiers. I have been trying to rectify the reaction of the media, and I find that is impossible. I guess losing 480 Americans each day to lung cancer is not news worthy. 58,000 names are on the Vietnam Memorial, a war that spanned over 14 years. In just 4 months we lose the same number to lung cancer. The point of this is, we are not news worthy because of the stigma still associated with lung cancer. ACS approach to lung cancer is prevention, by encouraging people to quit smoking, but what about the 55% who never smoked, or had quit so many years ago, so as not to make a difference. The approach of ACS, and other organizations, seems to address those in their 50's by encouraging annaul chest xrays, especially those with a history of smoking. What about the increasing number of people in their 30's and 40's. Those people have yet to be recognized, or addressed by the media or other organizations. I again want to stress that I am a 20 year veteran of the US Army and in no way do I want to give the impression that those, who gave their lives for this country, that that was mute. To the contrary, they seved honorably and made the ultimate sacrifice. My point here is that battles are being fought right here at home and we hear little or nothing about this. Quote Link to comment Share on other sites More sharing options...
Donna G Posted January 17, 2004 Share Posted January 17, 2004 Correct! I had thought that if you added up all that are shot and killed in our own cities each day whether it would be more than over there, in other words are we killing each more of each other . I had not thought of comparing it with our disease. Donna G Quote Link to comment Share on other sites More sharing options...
teresag Posted January 17, 2004 Share Posted January 17, 2004 No doubt about it, the news media choose to emphasize the violent, suggestive, political and ugly to gain ratings. Lung cancer is viewed as a "mere human tragedy," unfortunately. As others have said, if the members of this site put a human face on it, emphasize that no one deserves this disease, that it is not just another "routine" tragedy, that may be the hook. I think the "popularity" of breast cancer has to do with its appeal as a curable cancer, and part of me suspects that Americans' fondness for the female breast plays a part as well. Lungs just don't carry the same cachet. Lung cancer is in a double bind: it's hard to get the public excited about something they see as incurable, and as long as that continues, there will be less funding and fewer prospects for cure/control. But I do have hope that there is a way out of this vicious cycle - by emphasizing the survivors, the non-smokers & "remote smokers," the young people, & the people who've beaten the odds. And there are lots of those people! Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 17, 2004 Share Posted January 17, 2004 That is interesting you mentioned that, I thought I was the only one thinking it. My secretary has VERY strong political views and we disagree, so I prefer to just let her ramble and I keep my mouth shut. Well she was talking recently about not finding weapons of mass destruction, and all the lives lost and I blurted out "That's nice, but more people die of lung cancer, innocent victims and to me that is more tragic". She was furious with me and I really did NOT mean to undermine the work our soldiers do, I just get mad at this disease and believe it is just as serious. I don't think Osama and Sadam are the terrorists, I truly believe Mr. Lung Cancer is the root of all evil. Most people don't agree with me though Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 18, 2004 Share Posted January 18, 2004 Funny you mention this Dave. Today in the St. Paul Pioneer Press Paper they talk about how many people die each day from a Drunk Driver in comparison to the War in Iraq. I think the MEDIA needs to hear from US!! Such as the World News Stations, Home Town News Stations, Etc.... NO ONE wants to hear of deaths in any way shape or form, but for some reason the Politicians and News Media people seem to think we need to be reminded over and over and over of the deaths in Iraq. I just want to bring our kids home from that HELL HOLE! blah, blah, blah!! I guess we Lung Cancer survivors aren't the only ones noticing that other deaths are being taken lightly. As are the people that have lost a loved one from Drunk Driving. Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted January 19, 2004 Share Posted January 19, 2004 Go to http://www.cancer.gov get the list of Comprehensive Cancer Centers throughout the US. Your donation should go to any one of those. Comprehensive Cancer Centers are linked with each other and the National Cancer Institute. Information is readily shared within this network, as are studies. The CCC network has the ability to transmit scans, lab work, pathology slides, etc, for differing opinions. The CCC are doing more lung cancer research than any other organization in the US. Most of these centers are affiliated with Universities and major Medical Schools. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 21, 2004 Share Posted January 21, 2004 Just remember that when you are making your donation to the Comprehensive Cancer Center that you specify that the donation is to be used for LUNG CANCER RESEARCH, and not smoking sessation programs, not towards research for breast cancer, or colon cancer, but for LUNG CANCER early detection and/or treatment research. You might check to see if that particular CCC even has a lung cancer specific research program other than preventative/smoking cessation programs. I know that when my Mother passed away from Lung Cancer the ACS received quite a lot of money in her memory... You can imagine how upset I was when I learned of their "official position" towards Lung Cancer and those who were diagnosed with the disease. Anyway....the point is if we aren't specific about where the monies are to go they will be directed towards whatever project the cancer center chooses. And I think it's already pretty obvious that Lung Cancer is at the bottom of the list when it comes to research. Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted January 22, 2004 Share Posted January 22, 2004 Fay: Thank you for picking up the fact that I din't mention about making the donation specific. What I about to say, I do not want this to be misinterpreted. This past summer, when I had the golf outing for lung cancer, my original intention was to work with ACS. After requesting, and finding at the ACS website, the financial report for ACS for 2001 and 2002, I changed my mind for two reasons; one is eactly what Fay said about the ACS stance on lung cancer is smoke cessation, and two, by the time the money actually gets to where it is supposed to be used, it is diluted to the tune of about 10 cents on the dollar. I switched beneficiary's to the University of Wisconsin Comprehensive Cancer Center for Lung Cancer Research under the direction of Dr. Joan Schiller. The golf outing raised just short of $6000. I have set a date of July 16, 2004 for this year's outing and will have the final information, entry forms, etc, available after May 1. I wil keep the Board up to date on this event. Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 22, 2004 Share Posted January 22, 2004 I would like to add that the U of M (Minnesota) Cancer Center also does research on lung cancer. Dr. Dudek (Onc Doc) at the U of M has a LAB that I was able to have a tour of by him and he is only doing Lung Cancer Reserch in his Lab. The U of M is also involved in a Trial regarding CT scan's verses X-rays for early detection of lung cancer. So, for those that might be looking to donate monies for these causes, the U of M Cancer Center is another option. It's on the Internet under the U of M Cancer Center. And as for ASC and lung cancer. My family did the same with my mom after she passed away giving them (ACS) $$$$ of dollars for lung cancer research and I know that's NOT where the money went. BUT, back in the 1980's we didn't have any lung cancer programs. And I'm sorry to say, I wouldn't walk across the street for ACS. They wouldn't have ANYTHING to do with us when we did a Lung Cancer Awareness Event at our State Capitol in Minnesota two years in a row. Just my two cents. Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted January 23, 2004 Share Posted January 23, 2004 I'm very interested in this thread of conversation, since I am both DavidC's sister and I work as a fundraiser for childhood cancer research. I really appreciate what all of you have said. (We hear much the same kind of thing about ACS from parents of kids with cancer, by the way. They do some good work, but they are definitely not getting it right in many areas.) The statistics for lung cancer are so... well, awful. All those comparisons really make us realize how big the numbers are. And groups like this help people like me realize that my brother is one of so, so many human beings -- with such great personalities -- who make up those statistics. Not a single one "deserves" this, nor should anyone "give up" on this disease in any way. (preaching to the choir, here...) Anyway, about where to give money for research... If you don't mind, let me offer a little insider's scoop from a professional fundraiser, and ask a few questions, too. First: Fay is absolutely right -- It's very important that if you want your money to be used for a specific purpose, you make sure to specify that when you make the gift. By law, if you "restrict" your gift to a certain purpose, and the organization accepts it, they must use it for that purpose. (Their other option is to refuse the gift, which does happen when agencies can't do what you want, for whatever reason.) All you have to do is write in a letter that goes along with your donation(s) that you want your gift to be "restricted for _____" (lung cancer research, early diagnosis programs, small cell cancer research, lung cancer patient support programs, etc.). Mind you, if you just say, "Please use my gift for lung cancer," they have a lot of discretion there... that may be fine with you, but it may not! If you're particular (and you have a right to be), then be sure to give specifics. Don't ever hesistate to call in advance if you have questions about how they can or do use the money. When in doubt, ask to speak to the Director of Development (the department that includes fundraising). Second: I agree that supporting Comprehensive Cancer Centers is a great way to go. They are doing top-notch research, and well worth supporting. There are other hospitals, especially those associated with university medical centers, that are doing good research, too. Pilot studies, for instance, need support -- Sometimes an expert has a research idea that needs to be pursued a little before they know enough to see if it's going to be promising... and then if that research yields certain results, they will have a chance for federal funding to take it further -- but they need money to do groundwork before they can prove that. And of course many hospitals have various programs to help lung cancer patients, and the more resources they have (donations and volunteers), the more they can do. 3rd: If you're making a gift, no matter the size, it can be made in honor or in memory of someone dear to you. Most places will send a card to that person or their family (if you provide names and addresses), letting them know you've make a tribute or memorial gift. The gift amounts are generally not mentioned. Tributes and memorials can also be restricted gifts! And if lots of people are giving in honor or memory of your loved one, you can call the organization in advance and ask that all those gifts be put in a "fund" restricted for something, and ask for periodic reports to see how much (total) has been given, if you want. (Please excuse me if I'm telling you things you already know.) 4th: I have not done this yet, but I'd like to find out if there is a cooperative research group for lung cancer. The Comprehensive Cancer Centers do a lot of joint research, but some diseases (childhood cancer, for instance) have actual "cooperative groups" made up of experts at a number of hospitals who all work together to set research goals and priorities, pool their info on results, share laboratory resources and tissue samples, etc. (The childhood cancer cooperative research group has over 5000 members at over 230 hospitals.) This makes research more efficient and, most important, it speeds up their results. If there's one for lung cancer research, I'd love to know about it. Does anyone know? Also, does anyone know much about the American Lung Association and whether they fund research? I'll volunteer to check it out, if no one else has. I've been meaning to. And of course, don't forget that there is a nonprofit being formed based on THIS GROUP! (I have volunteered to help with fundraising, as this develops.) Whew... Sorry, I just got on a roll there! Hope I didn't go overboard. DavidG, congratulations on raising $6,000 for research -- WAY TO GO!!! Thanks, everyone. I'm praying for everyone here to beat this disease. BeckyCW Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted January 23, 2004 Share Posted January 23, 2004 Has any one ever thought what would happen if a newspaper just ran the headline 480 americans died today! I bet everyone would read it just to see what happened..The trick would be to tell something about some of them before the words lung cancer are mentioned. Tell about 3 or 4 and how hard they have worked and information about their families. It should tell about the ones who are veterans and have paid their dues to this country but never recieved the same support that they gave our country. Make it really personal saying that they have been fighting for thier lives but lost because no one bothers to care enough to take notice. Mention that cancer is beatable but only when the public desides that these lives are worth saving just as any other life is. Make a statement about hope and being treated like it will be cured not treating it thinking from the first that it is a lost fight. All of these things need to be addressed but there has to be someone in the media receptive enough to take the chance. There has to be a way to find that someone. We have to keep trying..Talking about the issue here is good but it needs to get out where it belongs. Where the public can see it and most of all feel it. Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 23, 2004 Share Posted January 23, 2004 Hey Becky, Becky, Nice to have someone who knows about fund raising aboard. I have a simple question first off. What would it take to start up a FUND RAISING ORGANIZATION called. "LUNG CANCER RESEARCH ORG" ??? The reason I asked that is, I noticed in the Obit's today someone mentioned, "Donations may be made to "Leukemia Research". Just a thought. As for ALA, they don't do much of ANYTHING for Lung Cancer. At least NOT in Minnesota. Although sense we lung cancer patients have knocked on there doorstep and have tried to bring awareness to lung cancer issues,(here in MN) they have responded to our requests. I have worked with two people at ALA here in MN and they are trying to get ALA more involved in Lung Cancer Issues. Prior to that, they did NOTHING for Lung Cancer Issues. But, here's a good one for you. I had a phone call about 2 months ago from one of my contacts at ALA and she asked me "How many People in my Lung Cancer Support Group have Lung Cancer that was caused by RADON?" I told her NONE! Because ACS, NCI and some others only recognize Asbestos and Cigarettes as a cause for lung cancer. Otherwise they don't seem to know why or what other reasons there are for lung cancer. Well, ALA HAS information that RADON IS the Number 2 cause for lung cancer. BUT, NO ONE KNOWS THAT other then a hand ful of us. ACS, NCI just keeps focusing on Cigarettes and Asbestos related causes for lung cancer. WHY is that you ask???? My Answer to it is, $$$$$$$$$$$$$$ They can't make money off of Radon!!!! Just one of those missions I am on. We really need to get people involved in Lung Cancer Issues. Sadly enough, most of us on this board knows the bitter truth about lung cancer and the causes. My Doc's all put it this way. Asbestos, and Cigarette smoke are ONE of the CONTRIBUTING FACTORS that cause lung cancer. NO ONE THING CAUSES LUNG CANCER. They are doing GENE therapy trials with a lot of cancers and lung cancer is one of them. My Doc's also said, that lung cancer was and is in my GENE's as well and was also or IS also one of the contributing factors to why I also got my lung cancer. Lots to be discussed when it comes to this issue. It's goes on and on and on. Did you happen to look at that article that one of our members shared on the board about "Those caught in the grips of lung cancer often find little sympathy"? Well, that article isn't news for me, but IT is for many others. But the truth of it is. MOST people who will read that article WON'T BELIEVE it anyway! Those people will look at that woman and say, WELL, she shouldn't have smoked! But, what about all the one's that DIDN'T SMOKE? I have come across people that DO NOT believe you can get lung cancer if you DIDN'T SMOKE! Trust me, there are TON'S OF THEM OUT HERE THAT FEEL AND HONESTLY BELIEVE THAT. You can get HEART DISEASE from Smoking too, but you don't hear about that HALF as much as you do about Lung Cancer and smoking. Not to mention the fact that IF a smokers DOES quit smoking, they don't tell these people that there STILL AT RISK for getting lung cancer. People honestly think if they quit smoking they WON'T GET LUNG CANCER. Like I said, it goes on and on and on. Well, now I'm off on another tangent! I do know that MOST of the Comprehensive Cancer Centers DO get a lot of $$$$$$ toward cancer issues. I have had Doc's tell me that most CCC's and the MAYO Clinic have TON'S of money but like you said, The PRIVATE SECTORS also do A LOT of cancer research and help out Lung Cancer patients etc.... with donations as well. A lot of your research findings come from Private Sector Medical Hosptials, or Clinic's. So, I do encourage people to check with your Local Hospitals as well for donations toward lung cancer. YOU MAY BE SURPRISED what you learn and find out. The hospital I do my Support Group at takes donations for our Support Group. And this money goes towards coffee, tea, cookies, hand outs, etc.... to keep our group going. I think it would be a good idea if we could get people to check in there area's and see where donations could be sent to for Lung Cancer. We have so many people from different area's on this board. It would only take a few phone calls and then they could report back to the board share there information with us. I have taken up a lot of time here with this message. I will call in quits for now. I hope we can make a difference. PEOPLE NEED us and they don't even know it! Quote Link to comment Share on other sites More sharing options...
Guest Estrea Posted January 23, 2004 Share Posted January 23, 2004 Connie: I am with you. That is why I asked Katie to help with getting 501C status. But, we still need to organize this group to make things happen and no matter how many times I have pleaded for people to make good on their desire to help, nothing ever seems to happen. I hope now that Katie and Rickey are "in charge" they will make up a board, get organized and make things happen. I have volunteered to chair an activism committee/be on the board, but am no longer co-director. Lots of love, Estrea Quote Link to comment Share on other sites More sharing options...
Nancy B Posted January 24, 2004 Share Posted January 24, 2004 Estrea, I have seen your plea for help but just not sure what I can do. I guess I don't know what needs to be done. I do want to get involved in some way to defeat this disease. Where is the most need? Fund raising for research?...fund raising for support groups (Alcase, this site)? I am not a "leader type" but I can usually accomplish things when directed. I would like to be of some use somewhere. This site is just awesome and I would like to thank the people responsible for it. Prayers for everyone. Nancy B Quote Link to comment Share on other sites More sharing options...
Guest Estrea Posted January 24, 2004 Share Posted January 24, 2004 Thanks....at this point, if you can tell Katie B that you want to help that would be great. She is organizing everything these days. We need a board of directors and committees and I hope that once we are organized, we can make things happen! Quote Link to comment Share on other sites More sharing options...
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