SJAS Posted November 15, 2004 Share Posted November 15, 2004 Well, we made it through it. The rain held off and the weather was not too cold. The program actually came together nicely and we received lots of positive comments. We had pins, lightsticks, white carnations for everyone and some truly inspirational speakers. 1) The good news: We had staffers from U. S. Congresswoman Lynn Woolsey and State Senator Wes Chesbro's offices come, along with the mayor of my town of Sebastopol. I was invited to go to a big UCSF Thoracic Oncology conference in SF the next day, set up a table and talk with some of the top oncololgy docs in the U.S. Also, we met a woman who is an 8 year survivor. She had brain surgery and WBRT and is on Iressa and doing pretty well. 2) The disappointing news: Only about 75 people came, a good number of them because of Steve. With all the people who have dealt with lung cancer, it is disheartening to think that we would get that kind of turnout. Seems like we talk a great deal about no one in office listening to us and then those in a position to help us come and well.... Makes it hard to prove that people really do believe that lung cancer is an important issue, when we get that kind of political interest and no one shows up. Keep wondering where all the families/friends are. Despite my disappointment at the turnout, everyone insists that this should be a yearly event. Even the rep. from Senator Chesbro's office said that next year he expected the entire square to be filled. We'll see.... It was a huge amount of work, but I don't regret it. It was a good outlet for my anger at none of the big organizations planning anything for LCAM. Perhaps one of the other positive outcomes is that both the Amer. Cancer Soc. and Amer. Lung Assoc. did change their minds and wanted to help. The Amer. Lung Assoc. also set up an informational table. They were instrumental in getting me invited to the UCSF conference. I guess it's just hard for me to remember that just because this is the priority in my life, does not mean it's a priority in everyone's life. If anyone is ever interested in staging a "Shine A Light" event in your area, I would gladly share all the information which I acquired. The event is solely focused on awareness, education and advocacy because I feel that there are so many other groups focusing on fundraising, I want to go after the federal funding. It certainly did seem to hit a chord with the media. Pretty ironic that I was able to get the media interested and yet missed out with the very crowd that I expected would be clamoring for an outlet for their issue. Sorry, I don't mean to whine, it's just that I am so desperate to get this message across. It's been a long 12 days! Quote Link to comment Share on other sites More sharing options...
Andrea Posted November 15, 2004 Share Posted November 15, 2004 Joyce, You did an AMAZING job! Especially with the little time that you had!!!! I am in awe!!!! I agree with the rep, next year the square will be filled!!!!! You will be able to start earlier, get the word out, and people will flood the area!!!!! I wanted to come fly up North but I had a wedding I already rsvpd to the day after and would not have made it back in time. Keep up the excellent work! You are an inspiration! Quote Link to comment Share on other sites More sharing options...
Ry Posted November 15, 2004 Share Posted November 15, 2004 Well I think things went well when you consider how fast you put this together. Next year with more time to promote it you will have a larger turnout I am sure. This was an amazing event. I am in awe! Plus, it sounds to me like Andrea is coming on board next year to help you out. Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted November 15, 2004 Share Posted November 15, 2004 Joyce, I think you did a phenomonal job! The event sounds terrific in all it accomplished -- and as far as the turnout not being as high as you'd hoped, just remember that everything "starts" somewhere, and this is where you started. It will only grow from here, and I expect by leaps and bounds. The press and political forces getting involved was a MAJOR thing! You did something even the big organizations didn't want to take on, and it sounds like they were proud to be a part of it in the end. Congratulations and WOO HOO!!! BeckyCW Quote Link to comment Share on other sites More sharing options...
DonnaB Posted November 15, 2004 Share Posted November 15, 2004 Thanks for reporting back. I too would like to know ahead if there is an activity planned next year, or whenever - hopefully in time to take advantage of a low fare on Southwest . It will be great to be in Sonoma County AND visit family AND meet other LC families on the SAME trip. My SIL said that she did not see anything in the local papers or on the radio. Was there? DonnaB Quote Link to comment Share on other sites More sharing options...
ginnyde Posted November 15, 2004 Share Posted November 15, 2004 Congratulations Joyce and thank you for doing this while so very busy in all areas of your life. I agree, next year will be much bigger - the word needs to get out and you did it with so little time. Yes, I would like info on 'Shine a Light'. Thanks again. Quote Link to comment Share on other sites More sharing options...
SJAS Posted November 16, 2004 Author Share Posted November 16, 2004 Thanks all for the encouraging words. If nothing else, it was an outlet for me to get my frustration out at the lack of attention being given to LCAM. I hate to say it, but I did have an idea this a.m. that I am working on. Guess not quite ready to give up yet. More to follow on that. Donna: The KFTY Channel 50 interview was aired on Tuesday during the a.m news program (about 8:40 a.m.) and the KSRO 1350 interview was Wed. a.m. about 7:50. KJZY also aired announcements about it. There were 2 ads in the Press Democrat too, but I know we needed much more publicity. Really disappointed in some of the radio station responses and in the fact that the Press Democrat did not cover it. (Wrote a thank-you letter to the sponsors and volunteers in a letter to the editor and did include a subtle dig to the Press Democrat....Something about thanking the tv station and KSRO for recognizing that the disease which will take 160,000 lives this year is a newsworthy event. Hope it was subtle enough that they will actually print it ) Boy, I would love to have Andrea on board next year. Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 16, 2004 Share Posted November 16, 2004 Wow, what a great event! We here in Minnesota had events in the capital rotundra for several years, got some polititians to show but could not get the media really interested. I am impressed with your efforts! great job! Donna G Quote Link to comment Share on other sites More sharing options...
SJAS Posted November 16, 2004 Author Share Posted November 16, 2004 Katie, You really do a great job. As a matter of fact, I did bring up LCSC during the t.v. interview and gave your web site, mentioning how helpful it was. I had sent an email to see if you had any pamphlets for me to distribute at the event and the other places I went, but maybe you didn't get it because I didn't hear anything back. I did list this web site on the program as a place to get more info (if you want a copy send me your address and I can mail one). I know how much work it is to keep this going and fight for resources and I will be glad to spread the word. Quote Link to comment Share on other sites More sharing options...
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