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#11834 08-22-2007 04:01 PM
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POSTED ON ANOTHER THREAD BY BRIAN HILL:
Some good ideas, and on the sign in besides this, I think I will also add that there are hundreds of pages of content on the main web site to search for things as well. You wouldn't believe how many times a week I get a call looking for the foundation's address, which if anyone looked at the web site, is in the about us link. The board is the smallest part of OCF operating costs, which I have to tell you is in the lowest 5% of ALL charities in the US. 94 cents of EVERY dollar that comes to OCF goes towards the cause services, and that does not included any G&A overhead expenses or fundraising efforts. Anyone can check the IRS 990 forms that we all have to fill out every year and see where the money goes and how much there is. In order to be a 501c3 charity you have to be completely transparent and the IRS sees to that if you are going to keep your charter.

We will be doing a major fundraising outreach in November. Every email address that we have, every previous donor, every mailing address will get a piece from us on what we do, what it costs, and how we cannot do it without their support. The purpose of my post was just to remind people that while it may feel good to go to a Relay for Life, it doesn


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#11835 08-22-2007 04:02 PM
Joined: Jun 2007
Posts: 510
"Above & Beyond" Member (300+ posts)
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POSTED ON ANOTHER THREAD BY BRIAN HILL:
Wouldn't it be nice if ACS did anything at all for oral cancer? Perhaps in Australia they do. Here in the US, they are great at many things, but oral cancer? Not so much. You know early detecton programs, free public screenings, funding research related to it specifically, spending money on raising public awareness, something more than refer 25+ people a week to OCF for things. I think everyone that has an opportunity to support organizations that are trying to bring down cancer should do so. If ony OCF were as good at fundrasing as ACS..... I mean they really have this down to a science, and the staff to do it. For a disease that isn't waiting on new science to bring it down from the high list of killers, what we could do with a fraction of ACS's one month's take. We are a thIrd of the way through this month and donations to OCF are at about $192.00. At this rate we'll be lucky to have the message board up in three months. Sorry for sounding bitter. All organizations are trying to do good in the world, big or small. But too many of the small ones survive less than 5 years. Not because they do not do good in the world, but because they represent a small disease, with fewer survivors than say breast cancer. Fewer people getting it and fewer survivors = fewer donors and fewer volunteers helping you to bring in the needed funding. Then they are gone.

--------------------
Brian, stage 3/4 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."


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#11836 08-23-2007 02:05 AM
Joined: Jun 2007
Posts: 32
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I just became a member and will be donating, infact will be sending information to give to OCF. I am coming up with a fundraiser which I think will be a great event once all the the details are tied up.

I have a 30 year reunion coming up and maybe I can do something there. I'm not good at this stuff and I really want to do something. I feel the urgency but event planning, speaking, asking for money can be so intimidating. I guess one of the things I could do is ask Classmates.com permission to put something on the message board re: Oral Cancer Foundation and see what they say.

Petey has sent me wonderful information for my fundraiser. But as a member I know I need to do more. I can't see this website/message board folding. It's too valuable. This is scary and probably the exact "kick in the butt" I need to get me on the road.

"Keep OCF message board alive".


Donna; Age 50, dx w/ Stage 2, muco epidermoid carcinoma 4/07, maxiolectomy of the upper right palate 6/07, clear margins, no radiation or chemotherapy, close follow-ups.
#11837 09-02-2007 04:58 PM
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Posts: 510
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Today has been a sad day for all of us who loved Petey. Wouldn't it be wonderful if we could make donations to OCF in his memory?

I think Petey would be very pleased!


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#11838 09-03-2007 01:16 AM
Joined: Jan 2004
Posts: 1,116
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Hi, I have been crying about Petey's passing and that is the LAST thing he would have wanted, the FIRST thing would have been donations to OCF!

I agree, let's get it going in memory of Petey!

Thanks, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#11839 09-03-2007 10:57 AM
Joined: Jun 2007
Posts: 510
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...just want to 'bump' this topic so that everyone can read updates.........thanks!


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#11840 09-03-2007 04:05 PM
Joined: May 2007
Posts: 104
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What a truly wonderful memorial for our Petey......Christa & I are in!!!!


Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
#11841 09-03-2007 07:22 PM
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I made a donation tonight. Bless you Petey.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#11842 09-04-2007 02:36 AM
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I made my donation yesterday using the link Petey had posted. Rest in Peace, Petey, you fought the good fight my friend, .....Carol (AKA Crab Cakes)


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#11843 09-04-2007 07:40 AM
Joined: May 2007
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Can anyone help me on making my donation in pounds sterling?????
I tried to do it before, just following the link at top of page, but got embroiled in 'carts and checkout and accounts'
If it needs my password (which I have no idea now what it is!---how do I get it back and get to make this donation---was disappointed not to do it before, but now, in Petey's memory, feel even more helpless!
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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