Early stage power

[Guest Estrea]

Well, guys, we may be few in numbers, but let's face it we have power! We have been through hell and will continue to live with the psychological problems of recurrence always hanging over our heads, but we are ALIVE! That gives us power to make things happen. I keep hoping other early stagers like me will want to take up the charge and do something. I started this organization and site to make a difference, but haven't been able to do much since the birth of the twins and now with the impending move. But, you guys, especially retired ones, can lead the charge and get the rest of the people on this board motivated.

Instead of feeling guilty, let's take the lead...something people still in treatment with lousy diagnoses can't!!!!

What do you all think?

[Guest DaveG]

I totally agree with Estrea. Those of us in the lower Stages, those long term survivors of the later Stages of Lung Cancer, and family members (especially those who are surviving family members of deseased) are the standard bearers for Lung Cancer. Many of us in the lower stages are now "cancer free" and leading fairly productive lives.

Here are things (from my vantage point) that can done:

1. Email your Congressional Representatives and briefly tell them your story. Keep your letters short and to the point. The longer the letter, the chances are it will be discarded.

2. Encourage them to support the pending legislation for lung cancer research.

3. Follow-up in the following ways: place a telphone call to the local office of the Congression Representative or Senator; send a second, or more, letters with inquiries as to the status of legislation; check your local newspapers for listening sessions either with the particular Member of Congress or one of their staff members.

4. Use the same methods with the members of your local state legislature.

5. Run a fund raiser for lung cancer. Pick a beneficiary and contact their public affairs representative, or event coordinator. Beneficiaries can be any of the following (or similar): Alliance for Lung Cancer; local Comprehensive Cancer Center (designated for Lung Cancer); other local health facility specializing in Cancer. (These are just examples, you may have other ideas.)

Fund raisers can be any of the following: golf outing, a long distance run, bowling tournament, walkathon, or any similar event(s).

These ideas have been successful for other cancers. Now we have to put Lung Cancer on the "plate" and bring about awareness that this is NOT a cancer that is inclusive of one part of society only. Stress that risks associated with lung cancer are many and are not limited, as society for far too long has thought. When you start a fund raiser, make it understood that it will be an annual event. Make people want to come back next year. Look for sponsors for these events (this may be difficult with the first event, but as potential sponsors realize that you are for real, they will want to get their name associated with your event.).

These are just ideas and suggestions. As many know, I am organizing and promoting a golf outing to benefit Lung Cancer Research at the University of Wisconsin Comprehensive Cancer Center. I have been told that just $1000 can go a long way. My goal with this year's golf outing is to make 5 digits.

These events take time to set-up and plan. At a minimum start planning at least 6 months before the date of the event. Organize a committee to help in planning and the running of the event. Don't do everything yourself.

[Guest Estrea]

How about organizing everyone here to work on one big project that we have a committee organized with each member having responsibility for one aspect of it. For example, an organized effort to get information out to the media about this disease:

- the facts: kills more than any other cancer, noone pays attention to it/ lack of funding, 60% are non-smokers or former smokers, etc.

- the stigma: no one deserves LC

- survivors interviews (like you did Dave)

We could work with ALCASE to develop a program. If someone could work with Jan to develop a proposal, we could get a campagin going and make a difference. That's how breast cancer became so big...survivors did their thing in big ways in an organized fashion. I would have loved to lead the charge on this and, in fact, did start when I got pregant and all hell broke loose in my life! If someone (how about you, Dave?) would lead the effort it could happen.