#7123 03-17-2006 11:38 AM | 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,
Thanks for your explanation for the location and the concerns about Harlem. I didn't quite know how to express it and as always, you have eloquently handled the situation.
John,
I have registered my wife and myself at the $20 registration fee. After that, any donations sent to me will be passed on directly to OCF via the groups running the event. Any amount is welcomed with open arms. This will be a great way of helping this wonderful organization continue with it's mission.
Thanks.
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"
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#7124 03-17-2006 11:44 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Jerry, thank you to you and your wife for walking. I will mail you a check....OCF is a wonderful organization. Take Care, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#7125 03-17-2006 04:44 PM | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | I just receeived another comment about the walk being in Harlem. I have added to my previous post
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. | | |
#7126 03-22-2006 02:08 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hi all, As we get closer to the date of April 15th, I am moving this thread up to the top in the hope that others will find it and find a way to get to this great fundraiser. In lieu of attending, a reminder that any checks sent to me will be turned in at the event and the full donation goes to OCF. Thanks 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"
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#7127 03-23-2006 12:56 AM | Joined: Oct 2005 Posts: 122 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Oct 2005 Posts: 122 | Brian and Jerry,
I have sponsored a walker and would like to put in a plug for next year's walk to be in Florida. Was at the dentist the other day and got the information about the local hygienist training centers, dental societies, etc. When this one is done, I would appreciate any and all input about how to get organized. Is a year out soon enough to plan?
I am the poster child for early diagnosis and treatment, and would very much like to do this. I told my dentist she will be walking right next to me soon as she was writing down all the information for me. *could you write a little faster, Dr. H, I have to get back to work*
Sincerely, Lisa
SCC Tongue T1N0M0\Dx 3-10-03 Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03 3 Year Survivor!
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#7128 03-23-2006 03:27 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hi Lisa,
I'm not sure how last year's walk was organized as I was not a member then.
The one in NYC is being run by a consortium of groups and I believe that it is the brain child of NYU Dental School. This event is not related to the one last year and it will hopefully become an annual event in NYC. The goals of raising money for the OCF and increasing awareness of early detection cannot be commended enough.
I believe there was an attempt to plan another OCF walk sometime earlier this year or late last year, but it did not pan out. It would be great if you could organize one in your area.
I think I have the facts right and I hope Brian will check in and confirm this.
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"
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#7129 03-23-2006 04:16 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | The walk last year, in Virginia Beach, was put on by me and my family..............and was made a success of sorts by Barb, Danny, Carol, Rosie, Tom and Nikki, and other oral cancer survivors that attended. Barb and her entire family made tons of money for OCF. I had NO IDEA WHAT I WAS DOING with this walk and I also was NOT in the right frame of mind to take on such an event. I almost put Brian over the edge I do believe. These type of things need to be planned months and months ahead of time and it needs to be a group putting it on, not one family. I also believe a survivor needs to be in a good emotional state to do it. I will happily share my mistakes with anyone trying to plan one, so the same mistakes are not made again.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#7130 03-23-2006 06:54 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Brian,
Thank you for that post about why the walk is held in Harlem as well as the socioeconomic disadvantages that people living in Harlem and other "inner city" neighborhoods have to overcome, obstacles that those of us growing up with more advantages are sometimes unaware of.
I thought I would add that in addition to those huge socioeconomic obstacels you mentioned, there's some pretty solid research indicating that even when socioeconomic status and education is controlled for, blacks are less likely to get tests that they should have from doctors. It's not clear entirely why this is--could simply be racism or it could be that blacks mistrust doctors more and don't ask for tests when they need them as often as whites or most likely both reasons and maybe some others are at work, but one way or another, doing free screenings in a relatively poor neighborhood mostly populated by people of color is clearly where OCF should be!
I am hoping I can come to this but right now it looks like it will interfere with something else I already committed myself to (but am trying to arrange a way to get out of). If I can't come, I will definitely send money to sponsor someone else. is there anyone walking other than Jerry who would like a sponsor?
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#7131 03-23-2006 10:47 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hi Nelie,
So far the only one going other than me, as far as I know, is Barbara (Bobb131).
Hope you can manage to work things out. It would be great to meet you.
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"
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#7132 03-23-2006 05:52 PM | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | Actually this walk all started last October as a conversation between a 4th year dental student, Khadine Alston, and myself. She was the prime mover in all of this. I was the person who had done events like this for other organizations, and had the know how of what it takes to pull one off. As the event organization became more labor intense, (it takes a lot to put one of these on) we solicited the help of the University via Dr. Ross Kerr and Dean Mike Alfano. They helped pull in ABC and other sponsors to help fund the basics like T-shirts etc.
As to doing a walk in Florida, I'd be all for it, but be careful what you wish for, the operative word to getting one of these things off the ground is WORK, and it takes a team of people to pull it off well. It doesn't hurt to involve a dental school and other large organizations to help bear the load and make it happen. But if someone has the time, and the heart to organize an event, they should just email me and we can afterwards talk on the phone. I can give you an idea of how much is involved in making a successful event. A year ahead is not too long. Even though we have the process cook booked, it takes a while and LOTS of conversations for someone who has not done this before to get up to speed and develop the organization of friends, and other groups locally to make it a high attendance event.
By the way the comment about Barb Boland was correct. She contacted me and told me that she was bringing $15,000 in donations to the Virginia event. I was surprised and thought
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. | | |
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