Fay A. Posted October 27, 2003 Share Posted October 27, 2003 While I was in the hospital last week ALCASE's Lung Cancer Awareness Month kit arrived in the mail. It contains posters to drop off at the miscellaneous hospitals and Oncology centers, some pamphlets with info on ALCASE, and the kit itself contains 50 of the clear ribbon pins. I ordered an extra 150 to hand out. The afternoon I was admitted to the hospital the ER physician had been to my bedside several times already, and was dealing with the the medical problems in a professional manner, which was fine. But he then came to me and asked "Were you a smoker?" with that slight sneer to his voice that so many of us who have Lung Cancer have heard. So I said "Yes, Former smoker. I have a 9 pack year history, Dr." He was startled by that, and then he said "Well, you have autoimmune disease as well." I was in such excrutiating pain.....and not up to "educating" this man at the moment. I feel like I lost an opportunity. So I'm going to write a letter to the editors of the local papers, and do a better job of saying what I should have said-and WOULD have said-had I not been in such terrible shape. Fay A. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted October 27, 2003 Share Posted October 27, 2003 You go, girl! I have read other post where people referenced the Alcase "Kit", but I went on the website and didn't see a mention of a "kit" -- perhaps I am not looking in the right spot. How do I order it? Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 27, 2003 Author Share Posted October 27, 2003 Hebbie, I called the 1-800 number and ordered it, because I couldn't find any info on the web site, either. I had to pay for the pins over the initial 50 provided by ALCASE. But last week was my birthday, and I bought the extras as a "gift" to myself. Fay A. Quote Link to comment Share on other sites More sharing options...
Guest Estrea Posted October 28, 2003 Share Posted October 28, 2003 ALCASE has asked us to get the word out on Lung Cancer Awareness month and we will be putting up a banner. If anyone needs a kit they will be happy to send you one. I would love next year for us to get it together as a group and do something -- any thoughts from anyone?????? Quote Link to comment Share on other sites More sharing options...
bobmc Posted October 29, 2003 Share Posted October 29, 2003 Yea Estrea, been thinking about that too!!! I think we should do something in Central Park, health walk, relay something to make a splash. I think if you wanna get noticed in the northeast, that's the place. Seems like about the 2nd weekend in Nov. would be right after the marathon and right before the smoke-out. I'm not exactly sure how to get started but I will ask some people. If I remember, someone, ALCASE or Chase W/ Sloan- Kettering did something similar last spring. I 'm also now tied in with the Cancer Hope network, there local and are pretty close with Cure Magazine. I was there yesterday for training, seems like alot of very caring people who were receptive to lung cancer issue's. Also, still working with ACS, but unfortunately there's just a few protests going on in Jersey for the Clean Air Act. I do have to call them within the week so I'll bring up the subject or at least my frustration. I may have a little clout as they are doing a feature on me for Nov. but didn't wanna let that out until I saw it. Anyway, still writing alot of letters, but that's hardly enough. I'm thinking exactly as you are, we gotta do more. God bless and be well Bobmc - NSCLC-stage IIB-left pneumonectomy- 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Guest katie Posted October 29, 2003 Share Posted October 29, 2003 I have contacted Alcase by e-mail and by phone a total of four times each. They have never sent me any information. I sent four or five e-mails to their webmaster just trying to add my dad to their wall of rememberance and it took three weeks. It also states on their website that they give free ribbons to family members and cancer survivors. I called and asked for ONE ribbon, for my dad. I never got it. I called again several weeks later, and never got anything. I was hesitant to actually pay and order something from them because they appear to me to be unreliable. I called them to tell them that I set up memorials in my dad's name to Alcase, and again asked for a ribbon for me. To this day I still have not gotten anything from Alcase. And it has been 13 months since my dad's dx. and two months that he has been dead. KatieB Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted October 29, 2003 Share Posted October 29, 2003 The Univ of Wisconsin Comprehensive Cancer Center, Lung Cancer Support Group, will be manning a table at the University Hospital and Cancer Center, November 18 and 19. ALCASE is supporting us and is providing the materials for the table. I am planning to work the table both days. We are setting in the main lobby of the hospital, where vertially hundreds of people pass through on any given day. Quote Link to comment Share on other sites More sharing options...
Guest Estrea Posted October 29, 2003 Share Posted October 29, 2003 Bob, Fay, Dave: Here is where I am going...Tammi Wilson and I are now strategic partners in crime -- that is, we are plotting and planning where to go as a group. We are sending out an email to the whole group next week to kick off LCSC efforts. Step I is getting everyone info for LCAM. I know ALCASE is a problem, but they are sending me stuff that I can turn into materials for anyone who wants them. We are planning to get it together and find someone who can file for 501C status so next year we can do something for LCAM (among other things) and hold a rally or something (ideas are welcome!). In 1999, we held a rally outside the Philip Morris Building but had very few people show up -- that was before we grew to where we are today so I am hopeful that we will be able to make a bigger splash in 2004. We think the best thing for us to start chapters (Dave -- still want to do that and be our Director of Chapter Relations?) and work from the grass roots level up. ALCASE is not doing enough -- we have to do something on our own. Bob -- still want to be Activism Director? Fay, what about you, what can you do to help. Tammi and I are sending an email to the rest of the people who are into making a force and then an email to the whole group. But, right now, we need legal help. Do you know anyone who can help us file? Thanks, Estrea PS I am going to email these thoughts to a bunch of people... Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 29, 2003 Author Share Posted October 29, 2003 I'm going to contact a young lady who is a member of another on line support group. She is in her early thirties (I believe) and has lung cancer herself. She is also a practicing attorney, but I'm not sure in which state. I wonder if the ACLU would be willing to take us on? Let's face it...we're dealing with both discrimation and we are definitely an underserved segment of society. I also know of another lung cancer survivor who is an attorney, so will contact him as well. Any ideas about approaching folks from Massachusetts to see if one of the Kennedy's would be willing to do the legal leg work pro bono on behalf of and in honor of their sister/cousin Kara Kennedy, Sen Edward Kennedy's daughter who was diagnosed just about a 10 months ago? Look, I'm interested in doing anything I can. I'm attempting to start up a local lung cancer support group, but I'm not getting the positive feedback that I had hoped for. And frankly, I feel that ALCASE involvement in such is not heading in quite the direction I had hoped to go. I'm more inclined to go along with a LCSC Chapter, but I would need help with this. My health is kind of fragile right now...and I'm not sure how reliable I can be, at least for the next 6 weeks while I deal with the last rounds of chemo. But after that, if all goes well, then I am definite worker bee for the cause. I wish I were more of a "leader", but you know, God gives us all different gifts. I'm good are researching and writing, but I do best when someone is there to direct. I'm reluctant to put myself out there in front because I've had so many problems with my medical providers. It isn't so cut and dried... misdiagnosis, errors on path reports, surgeries where tumors were left behind to spread, errors in staging, etc. I want to help, but my story on how I got to where I am is a mess, and a bit of a miracle that I'm still here. I'm afraid that if I put my own face forward the focus will be on the mistakes, and not on what is really important at this time...what do we do for early dectection and better treatment and more Lung Cancer specific research. I have three children, Estrea, and I'm betting that two of them go on to develop Lung Cancer even though they don't smoke.... You folks tell me what you want me to do, and to the best of my abilities I will do it. Janet K. was my "partner in crime"...we were in early stages of planning a support group in the Southern Calfornia area before she became too ill. I'm hoping that someone else in the So.Ca area will step forward once the fires have burned down and we can breathe easily again. I was thinking of maybe Karen and Gina who live not too far from one another. And I think the idea of our doing something as an organzied group next year is wonderful. I do need to know something, Estrea. Has LCSC reached the point where I can begin to make charitable donations to this group. I've been asked by others, especially last week when I was in the hospital and we were unsure of how things would turn out. People were asking who I would want donations sent to in lieu of flowers. I want the money to go to where it will do the most good for those of us who have lung cancer. I think of ALCASE as one place...but I want it to go to a more proactive group. Chemo was yesterday...and I'm babbling. Need to lie down for a while. You let me know what to do and suggestions on how to do it. Right now I'm just flying by the seat of my pants.... Best wishes, Fay Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 30, 2003 Share Posted October 30, 2003 Dear Friends, I, too, am rainsing my hand to volunteer for whatever. Add my name to the list and let me know what needs to be done. We need to become the Susan B. Komen Fund of Lung Cancer. Ginny DeCoursey Quote Link to comment Share on other sites More sharing options...
Guest Posted October 31, 2003 Share Posted October 31, 2003 Boy Katie I agree with you, I am also not real impressed with ALCASE. It just seems with all their resources and donations that they should be doing more. Look at how many times they have posted on their Forum here. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 31, 2003 Author Share Posted October 31, 2003 I think most of us who are serious about activisim share Katie's and Guest's concerns. Estrea is correct, we need to do more ourselves. But ALCASE does serve a purpose, it does provide some services to those who have lung cancer (phone buddies are a blessing for many folks). We have to remember that ALCASE is primarily staffed by volunteers, so that may be where some of the miscommunication comes in to play. I'm not trying to make excuses. I just want to make as great an impact with Lung Cancer Awareness Month as I can this year, and then make other plans for next year...Hopefully I will feel really well for the first time in years. I should be through with chemo, healed from the Pneumonectomy, had the Meningioma and adrenal tumor dealt with, and building up strenght for real advocacy efforts. I'm limited right now, and it bothers me, but doing what I can with AlCASE's Lung Cancer Awareness Month Kit is at least a start in the right direction. Conditions are never going to be perfect...we just have to take what we can get and run (or at least walk as fast as possible) with it. Fay A. Quote Link to comment Share on other sites More sharing options...
Ry Posted October 31, 2003 Share Posted October 31, 2003 Filing for 501 C3 status is not a huge deal, years ago I did it myself because I was too cheap to pay an attorney the $500.00 they wanted to do it . I am sure it probably costs much more now but my suggestion is if Fay knows 2 attorneys, maybe one of them would do the paperwork for free . Then we could make donations to LCSC. Would be nice to be able to click on the site and do it with a credit card. Actually, maybe the process is easier now that we supposedly have a kinder, gentler IRS. Quote Link to comment Share on other sites More sharing options...
Cary Posted October 31, 2003 Share Posted October 31, 2003 I was wondering to file for 501c3 status do you just need to fill out IRS form 1023? or do you have to incorporate also? form 1023 does not seem that difficult to fill out and I would even be willing to fill it out if I had the proper info. Cary Quote Link to comment Share on other sites More sharing options...
bobmc Posted November 1, 2003 Share Posted November 1, 2003 OK, did'nt realize this was such a hot issue I forwarded a note from Estrea to my wife's brother. He's a local attorney and managing partner of the firm. She works for him and he's a great guy and good golfer. He's gonna have a look at it for us. We're already talking about next years golf outing to raise funds. I'll keep ya up to date, he's gonna start pulling the pieces together on Mon. God bless and be well Bobmc- NSCLC- stage IIB left pneumonectomy- 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
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