| | 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: 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 | This is the previous post from he same blog http://www.assertivepatient.com/2008/10/douglas-misguided-komen-fund-raiser-or-crook.htmlThis guy is one of many making money representing himself to be something that he is not. It is a problem for all non profits, and the big ones have the worst of it. Even OCF has had a problem with bogus sales of things to raise money for us, from which we never received a cent. Some people actually called ahead of time to tell us they were going to do it, used out logo, and more. Upon never hearing from them again, they claimed that they sold NOTHING so there was nothing to send to us. If you wish to help a particular charity, I hope you will deal with the charity directly, or if giving the money to a third party, write a check made out to the charity to give to them, so that it can only be cashed by the charity. Especially when people are feeling generous , after Katrina, Xmas time etc. watch out for these kinds of people. Unfortunately they make it hard for everyone. Scams are everywhere, and the only way to get a real tax deduction for your donation is to work with the charity like OCF directly - via the pay to name on your check, or direct contact. For donations under 500.00 your canceled check by the charity is the gold standard IRS RECEIPT FOR YOUR RECORDS. Over that amount get a written receipt from the charity.
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.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Re the IRS and receipts from non profits. First remember that you will only need to provide evidence of a deduction, if you are audited on that one deduction. Your chances of an individual audit is historically less than 2% nationwide and the IRS, absent fraud, only has 3 years from the due of your return to audit you. If you are one of the very unlucky ones to get audited, a 2 sided cancelled check will do 99% of the time. In my 36 years representing clients before the IRS I have never had an Agent ask for more proof than a cancelled check for a contribution deduction. In fact contribution deduction audits are very very rare so feel free to write as many checks to the OCF as you want.
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.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | If you are working for or retired from a company, don't forget to check if they have a donation/Gift Matching system in place -- If so, with a little effort on your part to register, you can double your charitable contributions to OCF and others. For example, Verizon has set up The Verizon Foundation and will match employee donations up to $5,000 per year -- Verizon retirees don't have this, but retirees from other companies Verizon acquired may or may not have it -- I retired from GTE Florida, which means I qualify even 'tho it is a Verizon acquisition.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | 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 | Pete: I didnt know you were from Verizon. Me too (former BA in PA) and so is another active member on here also. Small world. Ive been trying to get my contributions matched thru the Vz Foundation. Hope it goes thru. Next year I am going to try to get a team of 10 employees matched and that will be a nice donation for OCF. Sorry to get off track on Johnny's post. Hope he continues his improvement.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Fortunately, I left GTE before it was acquired -- I had enough trouble spelling GTE that I was sure I wouldn't be able to spell Verison...
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Mar 2008 Posts: 46 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2008 Posts: 46 | Well, I understand that this guy and companies like him can tick off people. But I wanted you all to know that I am doing ok. Recoop and therapy will take a while but I will get there. Check out my lastest entry on my blog to see exactly how I am If you wish. http://www.surviving-oral-cancer.com/John
Stage 4A SSC Left Tonsil, back of tongue and Lymph nodes on left side. Tonsil removed, Chemo and Radiation treatments completed on June 26, 2008.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | John, keep on keeping on -- Your outlook is great and what this stuf takes, dealing with the present and not dwelling in the past!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Mar 2005 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 58 | I have been not been able to participate in the forum since last March. I have been reading it carefully every day since I returned. I noticed there have been no posts from Minnie and her second occurance bout. I sent her an E-mail, but got no response. Any update would be very much appreciated.
Hacklene
Hacklene
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Hacklene,
We just recently had a whole thread on the General Board titled "Has anyone heard from Minnie". I just looked back and your answer can be found in a post by ChristineB on 10/11/08 at 1:42 pm EDT.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
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