#99864 07-21-2009 12:44 AM | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | For those of you on the board who do not read the "sticky" posts at the top of this forum, make an exception for Megan's one on rating OCF for the 2009 Cancer Fighters Award. So far only 28 people have posted. Compare that to one hundred for some others one. Here is how OCF is doing in the competition:
I'M TOO YOUNG FOR THIS!
New York, NY
100 Reviews
SURVIVING AND MOVING FORWARD:...
Boston, MA
33 Reviews
MAGIC BULLET FUND
Briarcliff, NY
6 Reviews
Best of West/Pacific
MESOTHELIOMA APPLIED RESEARCH...
Santa Barbara, CA
34 Reviews
THE ORAL CANCER FOUNDATION
Newport Beach, CA
28 Reviews
SHANTI PROJECT
San Francisco, CA
27 Reviews
Best of Northwest
BREAST CANCER PREVENTION FUND
Everett, WA
4 Reviews
Best of Mountain
FIRST DESCENTS
Vail, CO
13 Reviews
COMPASSION & CHOICES
Denver, CO
9 Reviews
NEVADA CHILDHOOD CANCER...
Las Vegas, NV
6 Reviews
Best of Midwest
MISSION4MAUREEN
South Euclid, OH
14 Reviews
THE HEART CONNECTION
Des Moines, IA
14 Reviews
SUPERSIBS
Rolling Meadows, IL
3 Reviews
Best of South
CANCER SCHMANCER FOUNDATION
Reston, VA
91 Reviews
LUNG CANCER ALLIANCE
Washington, DC
28 Reviews
SPIRIT JUMP
Boynton Beach, FL
18 Reviews
Let's see some Team spirit here. Read Megan's sticky. See how much your comments mean to Brian Hill. Then do something about it!
charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | We can't let anyone be ahead of us! Lets go OCF members! My competetive side is coming out, especially when I believe in something so strongly.
There is still time!! Go to the link Christine provided!
Thank you!!
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Come on everyone.
We CAN do better. It's not hard and it's the least we can do to repay OCF for all it has done for us.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | So great. I just spent an hour writing this stuff and then the website froze. How do I tell if it picked up my entry?
Hopefully, the winner will not be determined by the number of people who respond, but by the quality of the charity or am I being naive.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 |
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Marlene Yes, Thank you, That brings us up to 34. Eileen: This link takes you to the reviews filed. sorry, I don't see yours. OCF cancer reviews in contest
Everyone:After you vote, be sure to go to the OCF reviews and indicate that the other reviews are helpful. You only get to vote once, but I see that someone (probably an overly sincere proponent of one of our competitors) and it is only one, is going back and clicking Not helpful on OCF reviews, although they sometimes skip a screen. We will not sink that low as to go to their reviews, but I can honestly say that I have found each OCF review extremely helpful. Too bad it doesn't offer wonderful as a choice, So go back if you haven't and scroll through each screen and click helpful
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | The strange thing is if you are on their website and browse for cancer http://greatnonprofits.org/reviews/browse/cancerocf does NOT show up! (use the direct link provided or search for oral) Note you do not have do write your life story, just a sentence or 2. Turn off that TV and type! M
Last edited by Markus; 07-22-2009 05:59 AM.
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.
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | on a related note, why would anyone score these entries as not helpful?
WTH?
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.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | eileen - if you are having computer problems or it is logging you off, or quitting before you get done, just write your review in WORD before you go to the questionnaire site. Once there, cut and paste it into the appropriate window. Yes, the parent site Guidestar rates things based on financial data from the IRS and other criteria that they get from the IRS and other sources, unknown. All registered non-profits have completely transparent data, donation, financial info etc. But this Great non profits part of their effort to decide who rates well, (and will get national attention) will be ENTIRELY chosen by members of the public. Numbers of positive posts do make a difference.
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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