#72729 04-09-2008 12:32 PM | Joined: Mar 2002 Posts: 4,912 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 57 | This summer with the financial help from long time OCF supporter Laclede, the makers of Biotene dry mouth products, OCF will finally be adding full and part time individuals to move us forward and have a greater impact in the world of awareness and early detection. We have also decided that we will establish state chapters of OCF to handle free screening events, awareness events in cooperation with other institutions such as the one this month at NYU, and interface with patient groups, donors, and local professional medical and dental organizations in the state. The state chapter coordinators will be essentially handled like many other organizations, initially drawn from the ranks of volunteers and then when financially feasible, these could become at least part time paying positions as it grows. Obviously given equal skill sets, these state coordinator situations would best be served by people from the ranks of OCF survivors and family members if I have that choice. No one understands it all better than them. Anyone who has an interest in this and would like to discuss it with me, please let me know. Additionally, if you know someone who may fill one of the positions listed on the OCF jobs and grants page please feel free to refer them to me as well. Send me a PM with any contact and I'll get back to you quickly. http://www.oralcancerfoundation.org/jobs/index.htm
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: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | Congratulations Brian. This is a big step for a critical organization that has added so much to our understanding of the effects of this disease, has increased awareness and has offered an outstanding forum for supporting those of us dealing with it's impact. You are to be commended.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Brian,
I'll send you an email (probably tomorrow)...wish I were retired already, but I'll see what I can do about the state coordinator position. You may just push me into retirement sooner than I planned.
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Jerry, You could count on me for any additional help in this. Donna
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 57 | A couple of people have PM'ed me about other states and I made it very clear to them that even as a part-time endeavor, this is a bunch of work. To be really successful, the coordinator needs to recruit others in their state to help them with the things that need to get accomplished. It is not a one person kind of thing.
Here is my rely to someone that wanted to take on NY
I will call you in the next couple of days to talk about this....but be careful what you wish for. First, you have to put up with me, that's a challenge in itself. NY is huge and if you take this on, given the mother lode of opportunities and things we need to wrok on, you would need to recruit others to volunteer to help you, and ride herd on them to see that people with good skill sets were getting things done, and done well. Just a for instance, we should have a relationship with the NY state dental association, hygiene association, ENT association etc. We should be doing more free screening events there. We have a killer relationship with NYU based on my many years of being friends with the vice chancellor of the school, that relationship has to be nurtured. We need to develop individual and corporate fundraising community outreach programs, speakers on tobacco cessation and risk factors at high schools..... you can kinda see where this needs to go. It is a multi-person effort in any state let alone one as big and important as NY. If I have not scared you away yet, let me know and I will call.
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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Brian, I would love to be some part of this effort. I would like to be on your list, so that when you are writing to the group of possible workers, I'll get the info.
As one whose cancer was overlooked and made worse by an inept dentist, I feel very strongly about education of dentists and of the public as well.
I am just completing a very demanding leadership role, and I might find that I need a break, but I want to hear about it. This is so up my alley and so very important that I am finding it hard to resist! Perhaps there might be a partnership possible here in Louisiana.
XO
Last edited by August; 04-09-2008 08:24 PM.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 57 | There are now two of you in LA. That is a strong beginning if you both decide this is for you. I would also like to thank the others that have come forward to put their name in the hat for their geographic areas. It will only work with strong, knowledgeable people calling the shots and rolling up their sleeves. You guys are great.
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: Mar 2002 Posts: 4,912 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 57 | OK we have someone that is in Alabama but who can't commit to take on the challenge alone. How about someone else there that would shoulder part of the load. We're on a roll here, lots of interest. If you only think you can do part of it, and only have so much time to dedicate to it, drop me a note and say so, and we will beat the bushes for others to make an effective team in a particular state.
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: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Looks like there is support for this Brian. I may be opening a can of worms but, is there any thought of a similar project in Canada? I would be willing to help out, yeah, I said it. Good luck and best wishes for success. Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
| | | | 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 | Brian:
I may be able to help Jerry and Donna occassionally here in PA.
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 | | |
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