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

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.

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,
You could count on me for any additional help in this.
Donna

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, 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

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.

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.

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

Brian:

I may be able to help Jerry and Donna occassionally here in PA.

That would make PA the strongest group so far, and it would go a long way to having a team (which all states would have to develop) since it is way too much work for a single individual.

OK, for those of you who have offered so far, please send me all of your contact information. (PM or email) Chester and I will begin building the state chapters page and we will need some of this. I will send everyone an email in the next few days with some opening ideas. Those of you that can, please get a dedicated email address for this. I suggest going to gmail.com and signing up for a free one there. Perhaps you should pick something generic like [email protected] If we can keep the format simple everyone can have something similar.

This works well, I just went and got [email protected]

Thanks Brian! It's working again.

I'll set mine up tomorrow.

Jerry

Good day to all,

I live in Indianapolis, Indiana. I am willing to extend my time to help start the Indy chapter. I would like to know if there are others in the state that would be willing to do the same. I know it would be some work, but very rewarding as well.

Brian, if you hear of anyone, let me know. I will help in any way.

Thanks,

John R.

Stage 4A tonsil and back of tongue and now mid tougue left side and let us not forget the Nodes.

Brian:

I sent you a PM with my info. My email is all set up as [email protected].

Brian,
Sent PM w info
Malka

Hello Everyone,
I would be happy to work in the Virginia and D.C. areas. I got the email [email protected]. Anyone interested in working in Virginia?

Brian, Count me in for Georgia. Do still have my contact information? BB

Well I am in for NY ..anyone else want to join me ? I know that there is a support group here about 1/2 hour 45 minutes from me .. When I get some info I am going to go to the group and present it and see who I can recruit to help get this off the ground . I can almost Bet my Ent will do as much as he can .. Ready to get moving !!!

OK, so far we have

Amy McCann /VA
D'arcy Alt / West VA (need all contact info still)
Christine Brader, Jerry Wilck, and Donna Amos / PA
Sharlee Ringer / NY
Michelle Reeder / AL
Malka Lew and Colleen / LA (still need all contact info for Colleen)
Bill B / GA (still need all contact information and additional help in this state)
John R / Indiana (still need all contact information and additional help in this state)

Have I messed anyne so far? Also multiple people in any state is a good thing. If you are in a state already mentioned don't let that deter you from being part of the team.

There's a lot of states left......

Brian,

I am set up at gmail

I'll email the rest of the info.

Jerry

Hey Brian,
Sent you a PM. All my info is sent.
set up dedicated email:

Ok Brian, I just sent all my contact info. I look foward to hearing from you.

I will update the list of states this weekend. But I want to thank those of you that have tossed your hat in the ring right from the get go. This will really help us make progress in your states.

My husband and I are in for West Virginia...anyone else want to join us. Please contact me and let us know.. [email protected]

Jake and D'Arcy Alt

I will be in Boston for the weekend ..so I dont know that I will be checkin my mail...But I shall be back ON MON !!!! Raring and ready to GO !!!!

Shar

Hi Brian,
I'm not sure if you are planning a similar scenario for Canada but, as I stated before I would be willing to participate.
I have set up a Gmail account: [email protected]
Hope I can help out whereever possible.
Cheers,
Mike

Thanks Mike, I think the first thing to do is determine in your province what is the lay of the land. What do you think we can do there? What I will do is for now copy you this weekend on what I am asking of the others, which is going to be contact and fact gathering first, so we know who we need to work with in each state. Then we are going to have a discussion about with which of those contacts can we make something happen. A screening event, a media PR event, etc. So I think it shouldn't be any different in Canada, but I need to understand it a bit better before I leap.

Brian,
As you and everyone knows I always jump in with both feet to the point that many think that I am over eager. I do not view my enthusiasm in the same way. I will however, watch and view from the sidelines as you get this project going in the U.S. and try and learn as much as I can.
I guess this site, your efforts and all of the wonderful people on this site inspire me. Basically, I feel I can help.
I agree with the, "look before you leap.", and only want you to know that when the time is right I'll help.
Rome wasn't built in a day but, I was cursed/blessed with a mind that never stops.
Cheers Brian,
Mike

Brian,
I will try to check back later today and will be off until late Mon or early tue and then off Fri PM 25th - late Sun 27 or early Mon 28th.
I have been "privileged" to be hit with a 3rd form of cancer and will have a lumpectomy Wed 30th. There will be follow up radiation TBA. I am still committed to this project and am assuming that all will work out well. I am just very aggravated over this latest episode.
BTW, I orderd the new bag yesterday and forgot to order more of the patient information booklets. If you can, please add to the same order before it ships out.
Praying for good weather and great results for the NY event.
Malka

Malka,

I had breast cancer and oral cancer treated back to back (actually partly simultaneously) and I can promise you that if you survived oral cancer radiation and chemo (although looking at your signature line, maybe you didn't), the breast cancer lumpectomy/sentinal node removal and radiation (assuming that is what they have lined up for you since you mentioned a lumpectomy?) will seem like a piece of cake. And there is way more support avialable if you have breast cancer than for those of us with oral cancer.

Still, I don't mean to downplay your aggravation. I can understand it all too well! You'll be in my thoughts.

Brian and Sharlee, Sometime in the hopefully near future I would definitely be willing to share the work for the New York OCF branch. However, I am still facing a lot of challenges in terms of surgery for structures and possibly a more serious surgery for my trismus in the near future and between that and a lot of work commitments right now, I don't want to commit to something I then have to back out of because of other obligations. I feel like right now I barely have adequate time to hold together work, medical treatments, and the various mouth care and swallowing-issue things I need to do each day to make sure nothing gets worse.

But please keep me in mind if somehting comes up several months from now--maybe things will have gotten better.

Nelie