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.
I guess my "chick" (aka feminine) side came out after I joined the board. I contacted several members that I had befriended through the forum and gained a great deal of information, support and friendship from them.
I think this worked very well for me and I highly suggest personal, direct phone contacts. I have to agree that a phone support line would probably not work.
Susan I am planning to try to make the walk on the 27th, but can't make a definite commitment. If I know a day or more before, I will let you know or I may just show up and I'll find you.
Jerry
Jerry, that would be great if you can make it. I will be the one running around with a frantic look on my face!! I will be easy to find!
Welcome to the feminine side! It is not bad over here!
But yes peronal phone contact is very comforting. Not that I have experienced actually having cancer, but I can comfort someone taking care of an oral cancer patient and really know what they are going through.
Susan, I also may show up thats why I asked for the specifics.
As far as phone calls go, the big picture is much more complicated than anyone knows. Now we are talking about my line of work. Just think about publishing phone numbers. It would need to be an 800#, with many extensions. With so many different types of oral cancer there would need to have a routing system to try to ensure people get correct info. Not to even mention the legalities involved. Basically it would end up being a call center with people manning the phones who have brochures they read from. The reps would be very well versed with empathy and need to know tons of medical info. Its a nice idea but unlikely it could be practical. Its much better to make friends here and then exchange numbers if you want.
That does not mean that with the right strategic partners, ie. a local cancer center, OCF through it's state chapters will not work to get support groups in partnership with a cancer center. Malka is already on this in her state and as we get the other states rolled out, we will develop more institutional partners for OCF that can help us properly host these meetings. The strategic partnership in my mind is the essential key. Qualified medical people are part of the group. You get face to face time locally. But done the way some others have in someone's home without people you can confirm are knowledgeable, it isn't a great idea in my mind or in that of the doctors on OCF's board.
That would be great Christine. As I mentioned to Jerry, I should be easy to find, the crazy one!
Wow, I didn't really want this to become an issue. I'll keep ideas to myself from now on. Just trying to help.
Sue,
Maybe I am misreading your emotions , but I think that the discussion(s) born from your idea/post has been helpful and fruitful and you don't need to worry about the impact...we have gained from the idea....possibilities, roadblocks, alternatives, etc.
Thanks for you and everyone that chimed in on this,
Deb
Suemarie - I am not sure what the replies have upset you so much. There are reasons that it is the way that it is, and I think that those needed to be explained to you since you obviously were not part of the discussion years ago. No one intended for any of this to be rude, or disrespectful of your input, but only to tell you how we had come to the conclusion that this was the best format for us to do things, especially knowing that people had access to each other through this format, when you look at someone's profile and then you could arrange other meeting mechanisms if you were so inclined. ( emails, meeting in other online IM formats etc. all of which you can list in your profile so people can find you - it's part of the board's system) But if you think I was rude to you or something you have my apologies..... I took the time to explain it so that people would understand. Would people prefer that I just said we are not going to do that, and left it at that?
Please note these questions are in your sign in profile
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Sue
If I hurt your feelings, Im sorry. In no way would I intend to make anyone feel bad by explaining how complicated phone lines are. It would be a wonderful idea if it could ever work.
Allright already. I was just trying to throw an idea out there. Not criticize the way this site is run, Brian. I thought maybe because local chapters were being started this could possibly be helpful at the local level. I've not been a part of this site since the beginning as I only found it last year. I was not looking to start a discussion on how technically stupid my idea was. I WILL be getting a life soon.
It wasn't taken as a criticism. And when NJ gets up and running as an OCF chapter, I hope you will volunteer to talk to new patients, you will be quite an asset.
Well, one week to go before my cancer walk. Very nervous but everything is coming together.
Lots to be done in the next few days, confirming food, rentals, getting paperwork done, etc. But I know I will be making a difference and that is the best part. No matter the outcome I have made oral cancer awareness known in my hometown, a cancer noone knows about. It is a beginning.
I have received many calls from oral cancer patients, survivors, family members thanking me for starting this and I cannot begin to tell you the good feeling I have. Talking to them and letting them know there is a voice out there, OCF, who can help them deal with this disease, is so rewarding.
Anyone interested in doing the same, you can always contact me for more information.
I will let you all know how it turns out.
Again, it is Saturday, September 27th, Andover, NJ.
WE CAN MAKE A DIFFERENCE
Susan:
I know your walk is Sat. the 27th. What time and exactly where in Andover is this going to be held?
How long is the walk? I can't find that info.
Sue
Most of the walks we plan are about 4-5 miles (you can easily walk 3 MPH), but the reality of it all is that you can quit when you want and head back instead of making the loop. Walks serve several purposes, it gets a group of people with a common goal together, and people that see a large group of others doing something ask questions, want to know what it is all about, why etc., and though that people get the chance to learn about (in this case) oral cancer, perhaps for the first time they have ever heard of it. We have had patients come to events that don't/can't make the walk, but in the end it is more about being part of it all for a good cause than the length of any walk.
It's a wonderful thing. I'm going to try and make it. Maybe I'll drag my husband along even though "walking" is not his thing-I have to drag him around the block!
Hi Christine,
Registration begins at 9:00 am and the walk at 11:00. Screenings are being done during that time. The exact address is 350 Andover Sparta Road, Andover, Nj (Perona Farms) There is a renovated barn off to the side, since it will probably rain everything will be inside. I ws going to have tents set up but it looks like it will be alittle wet. So if you come bring an umbrella!! The walk is about 2 miles. It really is a pretty walk, around lakes, even if it does rain! HOpe to see you there.!
Susan,
In the last several years, at the NYC Walk, I was able to meet some OCF members, who had only been screen names to each other. It was really great for us to get together.
Since you know who might be coming, perhaps you can come up with some way for those of us that will be there, to meet. We could all supply you with our cell numbers if that would help.
I'm still planning on being there and praying for little or no rain.
Jerry
Thanks Jerry, that is so great of you to try to come, even in the rain. I check the weather every 1/2 hour, hoping for a change, nada.
The venue is a barn and since we will all be in there and not spread out, it should be easy to find each other. I think its a great idea about cell numbers as well, if you would like to send your number in a PM, I will try to get others as well,
Truly looking forward to meeting you.
Susan
What a great event. My husband was truly moved by how caring everyone was. It's really wonderful to meet people who are in the same boat-not that the boat is wonderful but the passengers are. I'm so glad to have met Christine, Jerry, and Susan. This was a great precedent to set!
Sue
Susan
Your event was a beautiful tribute to your brother. You did an excellent job at hosting the walk. Eva was so inspiring. It was so nice to meet my OCF friends Sue and her husband Neil, Jerry, and of course you. Thank you for helping more people become aware of the importance of dental screenings.
Hi everyone,
Susan's walk shows what hard work can do to bring together a community for a common cause. The turn out was great and I'm sure that next year will far surpass yesterday's attendance as the word spreads about the importance of early detection and the work that OCF does.
The location was great, the food was plentiful, the scenery was spectacular and I had my umbrella to assure that it wouldn't rain (nad it didn't). Besides being able to meet and spend time with OCF members, Christine, Sue and Neil, Susan and Eva, I met a friend of Susan's, Cassie. Cassie is a 10 year OC survivor and has been cancer free for 5 years, having had a recurrence 5 years ago. She has promised me that she will visit the OCF site and I hope she becomes a member.
As always Eva's message was motivational as well as emotional. There were 3 dentist's there that provided oral cancer screenings to participants and I spent some time talking to all of them.
I took some photos that I will be sending to Brian later today to add to the website so all can get a chance to view them. I hope that Susan and others also took some photos to send, as some of mine didn't look too great.
Jerry
Thank you Jerry, Christine and SueMarie for your kind words. It was so nice to meet all of you. You all are an inspiration and your presence made the day that more special. And it was great to meet Neil, Sue's husband. Please thank him for me for coming as well.
I do think it turned out great. The rain held off, which I am so thankful for. For the first event, we had 80 people attending, with 60 walkers. So I am pleased with the results.
The dentists who attended did a fantastic job with the screenings, and they said they will all be back next year.
Eve did a great job with her talk, people were inspired by her story.
We definitely had enough food for everyone as well. Local vendors were very generous with their donations. All of it was donated.
But most of all we honored my brothers life, spread the message about early detection and promoted the work of the OCF. So I was very happy with that.
I want to thank all who supported me during the planning stage especially Brian Hill. He guided me through this whole process and was extremely supportive. I could not have done this without him.
I hope next year, my attendance will double so more people will be aware of oral cancer, early detection and the OCF.
I do have some pictures, my battery did not make it, ( I will work on that for next year) but between Jerry and I, we should have enough.
Susan
Susan,
I'm glad to hear the walk was a success. Thank you for all your hard work. Although I wasn't able to attend the walk in person, I was with you in spirit. Hope to be able to make next year's event.
Thanks Susan, I really hope you can make it next year. Having OCF members there made it so special.
Christine, Suemarie, her husband Neil, Jerry and Eva made it a real OCF event!
We did make a difference!
You did have a good turnout from the OCF family. How wonderful. I certainly hope to make it next year.
Are you still accepting donations? If so, let me know how to contribute.
http://www.ocfstore.org/category_s/64.htm You can change the sponsorship number to add multiple increments if you desire.
I have often wondered, are there bracelets about Oral Cancer? They appear to be a great fund raiser. Similar to the pink ones for breat cancer. Is this something that can be done? I know I would buy them.
I have one suzanne,it is a pale blue one and i got it from the uk mouth cancer foundation.I wear it 24/7
liz
Suzanne,
I knew that Brian has commented about his feelings about bracelets so I did a search to save him some time.
[quote]"This has been discussed at great length. Do some searches. In my opinion we do not need an emblem, that isn't going to change the world. There are bracelets for everything under the sun, so many that you can't remember what all the colors are for. And while the ORIGINAL was a killer idea (I am still wearing the original that Lance gave me personally when it was a seed of an idea) that raised millions of dollars when attached to an international celebrity and his battle for numbers 6 and 7, the other ones are mostly forgotten. Pass"[/quote]
Interestingly Liz, the pale blue one I wear is for Multiple Myeloma, which I wear for one of my partners in our practice, that has had MM since 2002.
Jerry
I wear my my livestrong everyday as well as a SPOHNC (Head and neck cancer) bracelet that CAssie gave me at my walk.
I understand what Brian is saying about all the colors, the livestrong is the most recognizable.
But what about magnets for the car with the OCF logo on it that simply says "Early Detection saves lives" or something about getting your mouth checked. I know there are alot of those out there as well, but I know I read all of them when I am behind someone at a light! Just an idea.
Susan
My objection to all of this is that it is so easily commercialized. I am a breast cancer survivor and am turned off by all the pinkness in the market place. I have seen advertisments for ribbon pins, car magnet bows, bracelets, etc. in a rainbow of colors. The actual "cause" gets a very small percent of the sales.
We can do more good by encouraging others to donate directly to OCF, use the Amazon link and buy products from the OCF store. This is another answer to "What can I do for you?"
It is very easy to slip a few of the OCF brochures in a purse or jacket pocket and give them to doctors and dentists for their offices. I have spoken to med students, radiation therapists, etc. as I go to various tests or even in elevators. Take advantage of those group inspections by the medical students to give them a personal insight.
Most important: encourage as many people as possible to get regular checkups and to be aware of symptoms that persist for more than a few weeks or do not respond to treatment. This can be done in a non-alarming way, such as "it is better to check it out and catch it early if it is something."
Malka,
Beautifully stated.
Jerry
I agree,but none of the other cancers have as much trouble getting publicity as we do.
Actually we fair better than many.... though it can never be enough. Just be thankful we are not the Anal Cancer Foundation...... that would be a tough one. (There isn't one buy the way)
Over 1.4 million people are diagnosed with cancer annually in the United States. And I'm willing to bet that most people can't or don't know where to turn for medical/mental/physical help, research or advice. That they are at the mercy of the first Doctor they go to. All diseases and ailments are each bad in their own way. I look at my situation with OC and I think about my grandfather Flaherty's pancreatic cancer--mine is bad but his was devastating. To see him rot away at the limbs because of gangrene was horrible--it's something I will never forget. Tongue cancer or a stroke? Yes, I might have speech & eating issues but I'm not in a wheelchair. To say mine is worse then someone elses is just not rationale or fair.
We have a very good site to turn to. This site should be a model for every disease and ailment out there. From anal cancer to the military veteran having trouble coping, to the wife/GF being beaten. It's a confusing mad mad mad world, but a site organized like this one makes life easier. When people help, no matter what the cause is, it makes a world a better place.
Support OCF the best way you can--there are a few ways to do so. Accessing Amazon through OCF, buying from the OCF store, donating cash and spreading the word "OCF" to others.
I agree...this is the best site. I really wish I found it sooner!!! I will be purchasing a t-shirt without a doubt.
I may also donate money instaed of favors for my wedding. People do that a lot now. And seriously.....who uses those favors anyway?!?!?
Did you see on the news at 6:30 that by the year 2010 there will be 17 million deaths a year attributed to Cancer? And 10 years later add some more. It is time for someone or thing to make some sort of discovery and find a breakthru for Cancer treatment. It might be the year 2020 and I am wrong. But it wasn't that far away whichever it is. Entirely too many deaths.
One person every minute of every day in the US dies from cancer. But the cure will be elusive, it is not ONE disease, it is actually hundreds of individuals disease each with their own issues. We all know that what works in one, does not work in another.
My personal belief is that we will never eradicate cancer, there are too many reasons why we get it all around us in our environment, food, air, and water supply, chemicals, lifestyle choices, that we are exposed to, and in our genes. But I believe (not in my lifetime) that we can make cancer a manageable disease, that with the proper treatments and drugs you will survive and deal with, maintaining remission through those modalities.
A recent OCF news story you would have gotten if you subscribe to the free OCF news feed
http://oralcancernews.org/wp/2008/12/cancer-to-be-worlds-top-killer-by-2010-who-says/
Brian, is this OCF news feed the same as the OCF Newsletter that we sign up for on this site? XO
I do agree with you Malka about the over abundance of all the cancer products (like breast cancer) My grandmother is breast cancer survivor and if we ever bring somethng pink into her home, she will beat us!!
I was just thinking of ways to get oral cancer talked about or just noticed, maybe putting more products in the OCF store, just like the t-shirts, maybe magnets for the car. People can buy them and donate as well.
But word of mouth is the best way to promote awareness. I have been putting brochures everywhere and wearing my walk t-shirt everywhere to start conversations.
Any way we can get the conversation started on oral cancer and the OCF is a good thing.
Getting the state chapters going for OCF is the greatest way to get the word out. One of our goals is to get brochures in every dental office, cancer centers and so on.
Collen,
I do not think so (I did not sign up for the newsletter until now), but I do subscribe to the RSS feed.
see
http://www.oralcancerfoundation.org/news/index.asp
The news feed and the news letter (also emailed - starting in 3 weeks as we have someone new to help me write it) are two different things. You have to sign up for each one. Unlike other organizations that charge for newsletters etc., everything from OCF is free, and we would never sell or provide your information to anyone else... so no spam from us or those we associate with.
http://www.oralcancerfoundation.org/newsletter.htm
I have tried to enter in OCF in the searches for goodsearch.com and goodshop.com to contribute to. But it is not listed as a participating organization. Who do we need to contact to add us?
I filled out the forms to do this. OCF should be on there in a week. This is a relatively unknown way of using Yahoo Search, which is a distant second to Google. But hey, it costs nothing to get listed but my time to fill out the forms.... so we'll see.
I think it is a great thing!