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Rick

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We need to think of ideas to get funds rolling in order to move this activism into high gear. If Breast Cancer advocates can do it, we can do it.

I cant stand to lose anyone else... What needs to be done to increase awareness, increase funding and research but how do we get there - Give me your ideas and thoughts!!!

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In my opinion the only thing that will get more money for lung cancer is if more of the life long non-smoking LC patients start to advocate. This is what scares people into helping, the thought they may develop the disease. I remember as a little kid "AIDS" always being associated with homosexuals and they had no funding. They have now managed to to disassociate AIDS with that lifestyle and make it "just another disease" that anyone can get. If AIDS can become mainstream there is no reason that Lung Cancer can't. We just need better media savvy and tactics.

Cary

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Here's what is happening in Madison, Wisconsin. One of the local TV stations, WISC-TV Channel 3, has taken on lung cancer as its sole advocacy role. The umbrella corporation also owns Madison Magazine, which featured lung cancer in its November issue. The cause of lung cancer also hits home with this company, as the editor of Madison Magazine, Brian Howell, died of lung cancer, just before Thanksgiving.

Last week, several other survivors and myself, were video taped for a project that Channel 3 is working on. We will be featured in 30 second and 1 minute spots that Channel 3 is going run through out the year, and not just November, as, to them, every month is lung cancer awareness month.

Here's my point. Before we can venture off on national awareness, we have to get local awareness established. The backing of Channel 3 has been 3-4 years in the making. Awareness is not going happen over night. It takes being deligent, on the local level, and finding a media outlet willing to take lung cancer on. It is hoped that lung cancer has been destigmatized in other areas besides Madison, WI. Once larger metropolitan areas, other then Madison, WI, has recognized lung cancer for what it is, a very devastating disease, we will make progress. I have noticed, that others on this board are making the effort to accomplish this, within their home area. Greater awareness is coming. It has been slow, but I see big things happening within the next two years.

Remember this, the University of Wisconsin has long been known for their research record in many areas, including medicine.

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Oh, pooh, DaveG! One area needs to get recognition at a national level for the whole thing to take off like a fire in a hayfield in August. There are lots of "sleeper cells" in cities all over our country, we just need to find a way to DO SOMETHING with the organization we have now...

Cary, as for non-smokers needing to get in on the act for more awareness out there, count me in - just point and click! :wink:

Newspapers -through a reporter OR editorials, TV stations (EVERYONE's online nowadays), magazines - Woman's Day, Cosmo, etc. have sections for letters from readers. If we ALL gathered addresses and wrote to them so they were "inundated" with the SAME MESSAGE from all four corners and everything in between, it would be a wake-up call for them, wouldn't you think? A large letter writing campaign, maybe a petition, signed by survivors and their family members...

I'll do what you need in my corner, I type pretty fast and make a living on my grammar and writing skills.... I can research, cite sources and "massage" the words.

Engine's running, hand me a map! 8)

Becky

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Becky,

I'm with ya girl....

Shows like 60 minutes, Dateline, 48 hours..... if we could get their email sites and everyone write to them...tell them our stories and how we all meet online for support, and have become friends through this website. If enough of us write them, on the same day for instance, we WILL get noticed. We just have to make our emails good enough to interest them in our cause and us!!!

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Great work Cary!!!

Is everyone up to writing this weekend??? I think if we write them, it will need to be the same time period so we stand out.

I'm game..nothing to lose, thats for sure!!! Next week we can do the talk shows!!! 8)

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I have been writing

[list=]Oprah Winfrey show

Dr. Phil show

the View

60 minutes

each 1 time per month for the past 6 months and have not even received a followup from any of them.

I hope that by sending a mass flood of mail to them, they may take notice.

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What about Montel? I know that when he started he did "good stuff" and seems to have turned to trash, but he ALSO did a show on lung cancer. I didn't watch it because it was an interview with a woman that has since died and the opening was that she had the disease only because she smoked and the underlying "truth" seemed to be that only smokers get it - and deserve it. Kinda pissed me off so I turned it off...

BUT, he has health issues of his own and may be more sympathetic to ANOTHER foray into the lung cancer issue... Maybe? I dunno...never been a celebrity, have no clue how they think... :oops:

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If we plan on doing a mass emailing we might need to post it in the general forum, this thread has only had 79 views so far and it is probably mostly from the 5 of us. maybe we can make up a sample email that people will be able to cut and paste, If we make it easier more people will email.

Cary

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Please don't take me as being one to throw cold water on the fire. I would like to relate some things to you that have been attempted on a national scale, but have been put down. Approximately a year ago, several CBS affiliates (I found this out from one of the local TV personalities) across the country tried to get Oprah to address lung cancer. She said she would, as long as the emlphasis was on smoking. Several big wigs have tried to get her to reverse her stance and lung cancer, and my understanding is, "she is considering it" (quote/unquote). In November 2002, NBC Nightly News with Tom Brokaw aired a story about Barbara Parisi, whose story can be found at http://www.alcase.org NBC did an excellent job with that story and I emailed Barbara right after I saw it aired. Barbara told me that it took many months of work just to get that spot. NBC has since stayed away from the issue. Attemps have been made with CBS and ABC, again the emphasis is on smoking. So, there's that stigma, staring us in our collective faces, that many still believe.

Now what has happened in the last 24 hours. WISC-TV, Channel 3, Madison, WI called me today about the golf outing I have organized over the past two years. I am doing it again in 2004. Channel 3 has made an offer to help me with publicity and obtaining corporate sponsors for the outing. This, again, will benefit lung cancer research at the University of Wisconsin Comprehensive Cancer Center, under Dr. Joan Schiller. This past golf outing raised $5875. With this type of backing, it is hard to predict what we will raise, however Channel 3 believes we can get it into 5 figures.

I guess what I am saying, is if we want national attention, at this time, we have to admit that smoking causes lung cancer and that it is the sole cause. I been there folks, til I'm blue in the face. I commend you for trying, but be aware, big time TV still believes that smoking is the only cause of lung cancer. I highly, and mean highly encourage you to work on the locals, they get more coverage on a daily basis, then one special would get. The locals are more cognizant of our cause, and you will find that they are always looking for a story. Organizations like ALCASE and Lungevity have been banging on national doors for several years now and we've all seen the results - nothing, nada, no where.

I've had this disease for over 2 years. I have cooresponded with ALCASE and Lungevity on this subject many times. It has been the same thing - "Glad that you are able to get some local recognition". The more local coverage we get, the more power we will have at the national level.

On the plus side, there are several Bills before Congress about lung cancer. This is a first and compliments have to go to ALCASE and Sheila Ross, and others. Congress has never before this, addressed lung cancer as a sole entity. At least 2 Bills are presently in Committee, one I think is in the House Finance Committee. My local Congressional Representative, Tammy Baldwin, (D) 2nd District, Wisconsin, is co-sponsor of one of the Bills.

Please don't get me wrong - been there and done what you are proposing. The scoop I am getting, at this time, the big boys are not ready.

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Dave, I appreciate you sharing your experience with us and I know that you have been active in the cause.

My way of living life is to be tenacious and I have met many big boys who weren't ready. To be perfectly honest, my feelings are that rather than back down from them, there is a need to keep yourself in their sights.. because like everything else in life, there will come a time when they are ready!

I really would like to climb on board with Rick and his letter writing campaign... and maybe take this weekend to email the sites that Cary found. Next week we can do different ones..and rotate if necessary. All we need is for ONE person to find something in ONE of our letters that they respond to.

Of course there are things that we can do on a local level. It is great that people are out there in the "trenches". AT this time, I have no spare time to do anything locally..but I do have the time to send emails. This is why, right now, this is the course I am choosing to take.

If people want to email, there is no harm done after all. The worse we can do is change the world! :wink: I think Cary has a point about posting in General. If you guys are still for this...lets do it!!!

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OK... CARY-

You begin the string in the general forum about this. Beginning Saturday, we WRITE. I plan to handwrite one letter and then email loads. The handwritten letter will be duplicated on my copy machine as many times as I can get addresses for and I will mail them out on a local and national level. Every e-mail address I can find, I will copy and post my letter there too.

You want attention? Make it PERSONAL. Not statistical. You make them take notice- make them notice YOU and your "sad" sad story...and then slip the stats in when you have them by the ear. It's the old bait and switch.

Someone will notice...maybe only the locals, maybe someone national who is going thru what we are, you don't know until you try.

I say we TRY>

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I compliment all of you for your tenacity. Maybe you can get further than I have in the last 2 years. I have made big headway on the local level, and, as the recent loss in Madison, WI, was a friend of Senator Russell Feingold, I am hoping to make some inroads in that direction. I am hoping to be able to get an audience with Senator Feingold within the next couple of months.

I look at this local media support, which myself and other lung cancer survivors have gleaned, as being a step in getting national attention. I hope that by working with this local station, doors may be opened to me, and other lung cancer survivors.

Dr. Joan Schiller has asked me, as soon as she gets me stabilized, to work with Women Against Lung Cancer, an organization of primarily women physicians and health professionals, which Dr. Schiller organized. She has two or three women survivors working with her, but wants my input as a male survivor, who has worked with women survivors. Our group at the University of Wisconsin Comprehensive Cancer Center, is made up of mostly women survivors. There are only 2 male survivors as members of the group, myself and a very good friend, with whom I have much in common.

This is a first for me, to see so many women survivors react to activism, at one time. Katie has shown that she has some connections, hopefully this will help. I can foresee the day, in the very near future, that we all may get together as one and have a mass hugfest.

Please don't misunderstand me, I care for all of you. I just hope that you don't experience the same frustrations I have. I've been in letter writing campaigns before and didn't even get as much as one response. I have talked with local media people about this as well. (Please understand, Madison, WI and surrounding communities, have a total population of over 300,000, so this is not exactly a small city and it is the capital of Wisconsin.) I have asked Channel 3, to post the latest work on lung cancer on their website. This includes myself and nine other lung cancer survivors. If and when this occurs, I will post the link.

And please don't erase this thread, this is the most response to activism that I have seen in months. Don't blow out the spark, this just might explode into a wildfire.

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Lets do it.. I can draft up a form email that we all could use and put it under general and have everyone use it. I can give emails and etc as well. What ya think?

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Rick,

Sounds great, Katie told me to post this in the general forum, but I think you will do a much better job. If you can, make sure to provide a direct link to the message board in the email you are making. If one of the shows actually came to check out the message board and showed up at the main page they might miss the tiny message board icon. Maybe the message board icon can be made larger.

Cary

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I am in. I have also experienced the frustration Dave mentions--most recently from the American Cancer Society. I contacted them about legislative activism. They were very excited to have a lung cancer survivor contacting them and sent me lots of information about bills targeted to increasing taxes on cigarettes and other things that all had to do with smoking. I told them that while I think that smoking is a bad and obnoxious habit, and I would love it if cigarettes fell off the planet, my personal agenda has to do with getting the word out that you don't have to smoke to be in this boat. I haven't heard a word since.

Katie's point is a good one--tell YOUR story in these letters we are all planning. It's a whole lot easier to ignore large numbers than to ignore a whole lot of names and faces.

Becky

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Count me in.....

In early November I contacted the local paper in South Jersey via e-mail, asking them to do some sort of story for "Lung Cancer Awarenesss Month" and told them a little about my personal story, that I was a lifelong South Jersey resident, blah blah blah. Never heard back from them.

I also contacted SELF magazine, which is pretty "up" on health issues and had practically an entire Issue dedicated to Breast Cancer in October. Never heard back from them either. They did have a story in there by an actress who quit smoking because of a family member who had lung cancer, but it was more about the actress than lung cancer......

It is VERY frustrating but just point me in the right direction and I am ready, willing and able to do what it takes to get the word out there!

*I wanted to say that I really like Debi's idea of making it "personal" -- how we have all met online in this forum and have become friends and support one another. I think that could be the "hook"!

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Count me in too. I will do whatever it takes to get the message out. People need to start realizing that a large number of lung cancer warriors are those who've never smoke, and those who quit years prior. And NO the answer is not second hand smoke.

LC is not discriminatory. LC needs it's fair share of funding. How is it that the largest cancer killer is the number 6 funded cancer? The reason, smoking and it's stigma.

I've thought a lot about what to do to raise funding for research. Everything from starting up my own cheritable foundation to organizing events for LC awareness. I've never done it, but part of me feels like I would be a great organizor. I loved organizing my wedding, the biggest and best day of my life. I'm detail oriented and timeline driven. I've thought and researched doing something that would catch media attention, like a rock fest for research, or a run/walk with cancer survivor from all over the nation. I think if we sponsor an event, the media will not be able to ignore us. It's like Dave, he organized the golf outing, and that was the foot in the door for Madison's local media. We can do something like that on a global level.

I don't know what it takes, all I know is I have a desire to do whatever it is, and whatever it takes. I don't want to lose one more friend. I don't want to lose the love of my life. We need a cure, we need research, we need funding, we need attention!!!

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Count me in also. Let’s do whatever it takes!!!! Peace, take care and God Bless.

Rich

*************************************************************

The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / That’s The Key

*************************************************************

http://www.plwc.org/plwc/MainConstructo ... 08,00.html (Questions To Ask The Doctor About Lung Cancer)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free)

http://www.drugs.com (Drug Information Online)

http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education)

http://www.nlm.nih.gov (Unites States / National Library Of Medicine)

http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia)

http://www.google.com (Great Search Engine)

http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

http://www.cancer.org (American Cancer Society)

http://www.cancer.gov (Cancer Information Service / NCI)

http://www.cancerresearchcenter.org (Cancer Research Center)

http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR)

http://www.cancerhopenetwork.org (Cancer Hope Network)

http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders)

http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

http://www.lungusa.org (American Lung Association)

http://www.ama-assn.org (American Medical Association)

http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer)

http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder)

http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net)

http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory)

http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

http://www.patientadvocate.org (Patient Advocate Foundation)

http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects)

http://www.cancerlinks.org/lung.html (Lung Cancer Links)

http://www.cancer-free.com (Cancer Free Connections)

http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite)

http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page)

http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary)

http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages)

http://icare.org (ICARE / The International Cancer Alliance)

http://www.vh.org/index.html (Virtual Hospital)

http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues)

http://cancernews.healthology.com/focus ... cancernews (Cancer News)

************************************************************

If I Could Catch a Rainbow:

If I could catch a rainbow, I would do it just for you, And share with you its beauty, On the days you’re feeling blue. If I could build a mountain, You call your very own, A place to find serenity, A place to be alone. If I could take your troubles, I would toss them in the sea, But all these things I’m finding, Are impossible for me. I cannot build a mountain, Or catch a rainbow fair, But let me be what I know best A friend that’s always there. Author Unknown

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