This is Susan Lauria and I just came on board as the new Events Coordinator for the OCF. Brian would like to get the state chapters up and running and hopefully I can help him with this great project.

I am in the process of compiling a list of volunteers (and thanks to all of you I have already contacted,) so if anyone is interested in being a part of an exciting new adventure please let me know.

Spreading the word about the OCF, early detection and awareness of this disease is our goal. Giving out information, organizing screenings, contacting local health professionals and educating people of all ages about oral cancer and how we can stop it at its earliest stages, is our plan.

I am in the process of organizing my own oral cancer walk in memory of my brother David. It will be on September 27th, in Andover, NJ. I have been planning this for months, it takes alot of time but if I can save one persons life, it means everything! I truly do not want to see anyone suffer the way my brother did. It is up on OCF website under current ocf events. Anyone in the area, please come!

Everyone can reach me here or at [email protected].

We will and can make a difference!

Hi Susan.

First let me say Im very sorry for the loss of your brother. Please give a few more details about your walk in memory of your brother. What time and exactly where it will be, maybe some people from OCF would be able to attend.

I look forward to working with you in the future.

Hi Christine,

Thank you for your kind words. My brothers loss has been devastating to me and my family. By doing this walk I am honoring his memory and helping others, help which I could not give my brother. I am so much more informed now.

I do read the message boards quite often, you have been so helpful and thoughtful to alot people. I am sure you have made many people a little less stressed and your words have been comforting.

My walk is located in Andover, NJ at Perona Farms, on Andover-Sparta Road. It is in Northwest Jersey. This was our home for many years and my brothers friends planted a tree of life there with a stone with his name on it. My brother was cremated and his ashes were spread in the ocean, he was a surfer for many years. Ithought it would be a perfect place to have the first walk.

Registrtion begins at 9:00 and the 2 mile walk begins at 11:00 am. Ido have a stage 4 oral cancer survivor to speak after the walk, as well as refreshments.

The walk is up on the OCF website
http://www.oralcancerfoundation.org/events/current_events.htm

I will try to post more informtion on the message board. Thanks for your help.

Take care and once my walk is done I will be more focused on strting the state chapters. I look forward to working with you as well.

Susan

I wish I could join you. I live in Central Jersey but am selling programs at the High School football game that day. I guess life goes on, huh? Have you given any though to a support phone line for people who need to talk to someone? I would be willing to help out with something like that. This is a wonderful place and I think it would be great to have a phone number people could call to get support. I don't know if that's even possible.

Sue

Sue,

The phone line sounds like a good idea, I will bring it up with Brian. If you would like to help out in other ways as well when needed let me know, we are trying to get chapters of the OCF set up in each state to promote oral cancer awareness. If so let me know and I will add you to our list of volunteers. Thanks, Sue,and I hope to talk to you again soon. Have a great time at the football game! I miss those days!

Susan

The question with face to face, small, or individual support functions (and why we chose this format) is that in each situation it is really dependent on that one volunteer's knowledge, experiences and people skills. When I first came out of treatment I went to two different SPOHNC group meetings in different states. To be honest they were a waste of time. No one knew anything, and while they were nice people (the 4 that were there), and could sympathize with my problems, no one had any work arounds or answers. Here, you get lots of ideas. You get input from people from all types of treatments, geographic locations (private pay and socialized), and while some (me in particular) are not so good at giving emotional support but better on science, others make up for that. That's why we did this instead of trying to do multiple face to face or phone support. Also people come and go. Someone like Gary for instance, who is one of the strongest posters on OCF, eventually gets tired of answering the same questions over and over. He takes a brake for several months then comes back. Others are here for awhile after treatment then move on with their lives. If he/they were the phone person, how does this work?

I just thought if there were volunteers who could lend emotional phone support it might be a good idea. There were times when I wish I could have picked up the phone and talked to a human with some experience with this. I do however understand the multi person approach this board provides. This is the most wonderful place with the most wonderful people. Maybe it's a chick thing to want to talk to someone on the phone!

Sue

Brian

Just a thought in this direction. Many of us are on at least one IM service. On many of the other �boards� I subscribe to, it will list their userid for these services on the actual board posts themselves as a point of contact for that individual (strictly voluntary). Skype is one service that comes to mind for voice/video �chat� via the Internet. This was a user could contact another in real time just by looking to see if they are logged in.


Kevin

We didn't do IM's (this has all been discussed here a great deal before) because the discussions are lost as soon as they are finished. No one who lurks (and they out number the posters by the thousands) would get a chance to learn from the previous discussions. The reason this board has a search engine is so that new people can go back and hopefully get tons of information from previous discussions that will help them.

Also there is a cost function to have real time chats that OCF would have to float and we can barely make ends meet on the donations that we get now.

If everything was real time, people in different time zones particularly like Cookey and those like across the pond or down under would never be part of our discussions.

The board allows you to exchange what information you like privately, that includes phone numbers and chat contacts if you want to. If you look at the who is signed on link on the boards, there are seldom more than 2-5 at a time..... and those may not be the people that you wish to talk to. So you would still be setting up talk appointments.... might just as well give each other your phone numbers or whatever and talk. But if you guys want to IM each other off the boards there is nothing keeping you from doing so and your profile will collect your IM information to display. The biggest loss in my mind is the old threads that are very useful.

And last Suemarie, you are assuming that the person that volunteers to talk with you on the phone actually know something about your situation so that they are helpful, and have the people skills to emotionally support you. The variables in these things from person to person would make the experience sometimes great and sometimes worthless and empty.

I understand what Brian is saying and he is right about all the information saved on the boards. For someone just looking for informatin on their same situation, it is reassuring. But I also undertand Suemarie, and yes I do think it is a chick thing, sometimes you want to vent to a person, not a computer. I know that I needed to hear a voice and just wanted someone to listen to me when my brother was sick. I wanted someone who went through the same thing, caring for a family member with tongue cancer, to cry to and just to vent.

So getting the personal information from the messsage board, getting the ok to call that person to talk to, is something everyone can do on their own.