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Joined: Oct 2002
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Well, I must admit my enthusiasm is starting to lag. I really thought we had a chance at this, but it looks like it is going to take more than we have. How sad that we have to ask family, friends and co-workers to write a review when there are thousands of people here sitting on their hands.

Like Christine said above, if each of us could get ONE more person to participate, we could win this thing. JUST ONE MORE for each of you. That is not fair to those of you who have already posted, though. Why should it be on your shoulders to carry this when so many are sitting here reading these posts, but doing nothing about it?

For Pete's sake!!!!! 5 freaking minutes!!! That's all we are asking. 5 minutes of your time. I know I shouldn't rant. As they say, you catch more flies with honey than with vinegar. But it's really hard to watch this effort go down the toilet.

Maybe someone should post this plea on every board, not just the General one. There are probably people who just go directly to whichever board they are interested in and never even glance at the others. I'm too tired tonight to do it, but if anyone else thinks it's a good idea, please feel free to do so.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Okay

We're up to 137, but still trailing. I just sent emails to relatives that I haven't even seen for a couple years. And i even asked one of them to forward it on to others. I had my daughter send it out to her co-workers, who don't know me and didn't even know Heather. I'm pretty much on my knees begging. I don't know what response I'll get, but at least I know I did my best.

This probably sounds strange, but I'm even considering posting the request on the member boards at the Motley Fool. (I don't do Facebook, MySpace, etc., so can't get help there). I'm thinking that at this point, since so many of the people here that have been helped won't do it, we need to turn to strangers to get this done!!! How sad. frown


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
Joined: Oct 2002
Posts: 546
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Okay, guys, this is what I posted on the Motley Fool boards. If anyone is as crazy as me, feel free to use it to post your own appeal wherever you can. Also feel free to correct my typos, grammar, etc.

Hi everyone,

I have a request. My daughter had oral cancer, and during her illness, I found a wonderful organization who helped us tremendously, the Oral Cancer Foundation. It is a small, non-profit and is largely the work of one man, Brian Hill, himself a survivor of oral cancer. Unfortunately, my daughter did not survive, but during the 13 months that Heather battled for her life, the OCF Forums were my lifeline.

Right now, this organization is in the running for the Cancer Fighters Awards, which, if they win, will accord them national media coverage, which would be a REALLY good thing, because, if nothing is done to change it, in 10 or 15 years the number of young non-smokers who get oral cancer is going to be of epidemic proportions. Researchers have found there is a link to HPV, the human papilloma virus, which causes most cervical cancers, and which can be spread through sexual contact, so there are a huge number of people who are at risk, but have no idea what oral cancer is and what devastation it can cause.

The contest is based on the number of positive reviews that each organization receives. Unfortunately, tomorrow is the last day of this contest. I apologize for this being last minute, but I just found out about the contest a couple days ago. The details are here:

http://greatnonprofits.org/cancer

If any of you could write a review at this site, it would be a big help. This is the specific page for OCF:

http://greatnonprofits.org/reviews/the-oral-cancer-foundation1

The review can be really brief, something like "I know someone whose daughter had oral cancer and I know that the OCF was very helpful". The "What did i do part can be anything like "I think OCF is doing good work" or "I know how much they help people". Anything really. It doesn't have to be something that you did.

Plus you have to answer 2 questions out of 8 that they have listed. You can answer the one that asks what is their biggest challenge by saying they don't have enough funding. And What would they do with 10 million bucks? Help more people. Doesn't matter, just so you answer 1 in each column, I think.

Anything simple. The only 2 things you definitely have to do is give them a 5 STAR RATING and answer "YES" that it is for the Cancer Fighters Award.

You can read a few of the other reviews first to get an idea of what people say. and here is the OCF appeal if you want to read more:

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showf...

I know this is an unusual request and I really don't expect much of a response, but this is so very important that I'm pretty much on my knees begging anyone for help.

Thanks in advance to any angels who read this and respond.

Rosie
____________________

Last edited by rosie; 07-30-2009 09:04 PM. Reason: link was bad

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
Joined: Mar 2002
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Well Rosie, it was a valiant effort, and while I still wish to speak to this in a future post, those of you that did come, gave me a very special gift, and touched me deeply with your comments.

There were 6,000+ emails sent out by Megan, and Lord only knows how many by those of you that really pushed for this. I would have to say that the response to this effort mirrors our fund raising efforts, and outreach for local events. I think it speaks more to people in general and human nature itself, more than anything related to OCF or cancer.

From here let's hope that people, as they feel moved to, will continue to post to great non profits when they have been helped. Those reviews will be helpful when strangers to us, consider us as a potential recipient of their philanthropy.

I think the important take away that was clear from the GNP postings is that the people, no the community of people who are the OCF family, who come and answer the questions, both simple and complex - both medical and emotional - are the backbone of the foundation, and its most valuable and prized resource.

Second, that while this message board function is without doubt the most important thing that the foundation can provide to those in need, it is clear that we have done a poor job of telling people the many other things that we do. From educate dental students through countless lectures at universities, lobby at the NIH (at the NIDCR and NCI), CDC, and contribute information to congressional committees and the FDA on matters related to the population we serve, and in support of those who suffer the burdens of the disease. We were the first to call for non gender based vaccinations for HPV at the FDA, and our lead was followed by many other better known organizations. That we give money to support research in the areas that are hot ideas in oral cancer today like HPV research, and early detection. That I spend a great deal of my time serving and working with other stake holders in the oral cancer issue, to name a few the boards/work groups I sit on and work with each month; the American Academy of Oral Medicine Oral Cancer Task Force, The College of Prosthetics Oral Cancer Work Group, The Centers for Disease Control Oral Cancer Task Force, The American Academy of Oral and Maxillofacial Prosthetics Oral Cancer Task Force, The American Academy of Oral and Maxillofacial Surgery Oral Cancer Task Force, (there are more but you get the idea), and that OCF is a primary information/backgrounder source and fact checker for numerous media outlets as it related to OC from the NY Times to the Wall St. Journal, besides being quoted and interviewed as a reliable and trusted source on the OC issue from a national standpoint in more print publications and TV stations than I can count. That we work with special cause efforts - like providing input to the Kennedy team on passing the recent Tobacco/FDA bill as advocates for part of the tobacco problem they had not considered (OC), that we disseminate more than a million public information "what you need to know about oral cancer" public awareness brochures a year through events and dental and medical offices. There is more to list here, but clearly I have not worked on telling people what we do behind the scenes, and people think that the website and this board are all we are. My failure to tell people about our activities has potentially not done good service to our growth opportunities. We haven't done enough press releases on much of what we have accomplished, because making time to toot our own horn, always seems to take second place to getting the important work actually done. This is what our lack of human infrastructure holds back, and of course that resource costs $.

But regardless of winning this or not, I could not be more proud of those of you that cared enough to make the effort. I hope that others will add to the significant base of comments that you have all built as time goes by.... because there is always next years ratings to work towards.

And those of you that have been the most vocal about making this happen, your passion has been extraordinary. The fact that we got this far was propelled in large part by your collective passion, and I thank you for that.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Brian,

I apologize, because I did think about some of the other stuff that OCF does, but left it out of my review and my appeals mainly to keep things shorter. I tend to go overboard when I write and didn't want to have it so long that people didn't want to take the time to read it. But you are right, many of us tend to focus only on the forums, which doesn't do justice to OCF.

On another note, my cousin Tom, who hadn't even seen Heather since she was a teenager, wrote a review for me. And he owns a small business and is swamped with work right now, but he still took the time to do this for me, because he has heard me talk so much about how OCF helped me.

I realize I was overzealous last night. Posting on the MF forums was way out there, but I figured there was nothing to lose. So they think I'm loony. Who cares? I'm too old to care about that kind of stuff anymore.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
Joined: Jun 2007
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Thanks Brian!

I was struggling with what to write for my review because OCF is so much more than this message board. And if I were new to this and reading reviews looking for a site to go to, I'm not sure the board would be on the top of my list.

While I do appreciate this forum and the lasting friendships I have made here...when I first started frequenting the OCF, it was the information outside of this forum that caught my attention. I hope you don't mind I re-purposed much of what you wrote above.

I am so amazed and in awe of your tenacity and commitment to OC. Thank you for all that you do!





Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Hah!

I'm not so crazy, after all. Murph from Motley Fool actually wrote a review!

I'm flabbergasted! I don't even contribute to their forums regularly, so he has no idea who I even am, but he still wrote a review!!!

C'mon people, we really can do it. Including myself, that makes a total of 5 reviews I've gotten. Please, if I can get a review from a stranger, you guys can do it, too.

rosie

http://greatnonprofits.org/reviews/profile2/the-oral-cancer-foundation1

p.s. Margaret, thank you for incorporating Brian's comments in your review. It is the reviews like yours that will help people down the road when they use GNP site. I know the ones I'm generating won't be helpful, but I feel that the shot at getting the national media coverage is worth it.

Last edited by rosie; 07-31-2009 06:09 AM. Reason: fix typo

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
Joined: May 2007
Posts: 666
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Alter egos!!
In the era of multitasking and parallel computing we should consider alter egos....

IF you go to
http://greatnonprofits.org/
from a DIFFERENT computer you can enter another review for OCF. I finally found an outlet for all these tiny voices that I constantly hear......

M (and others)

PS: Just make sure that your alter ego also writes a positive review

PPS: I do not think that it (system) checks the email address... most people have multiple emails anyway??




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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Yes I posted yesterday that I have had 4 done from 4 different e mail addresses. I don't think the computer IP address is important, just the e mail address.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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If I try the same computer if will not let me do another review. (tried that on 2 different ones)

M


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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