#76124 06-24-2008 05:03 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | Those of you that have volunteered to help on a state level with awareness initiatives, support groups and other OCF activities have been let down by my inability to get a few days to put all of you together into projects that will get things moving. Having finally gotten to the point where I realize that I have to have some help doing this if we are ever going to move forward, I have enlisted someone to make all this happen.
Next week Susan who has been organizing a walk/screening event for OCF in New Jersey is going to oversee this aspect of OCF along with input from me. Please look at the current events page of the main web site to check out her current event. Johnson and Johnson was the first major supporter to help her in this. She has demonstrated to me that she knows how to make things happen, is a good communicator, and much more than I, is very organized when it comes to tons of little details. By Monday all of you that have volunteered to pick up a state, will be hearing from the two of us and we will finally get things off the ground. I am sorry this has taken so long to get rolling, but we're finally on the path. Anyone who would like to volunteer some time to OCF and has not already, please send me a PM and I can team you up with others already in your state, or help you start a new OCF chapter.
Lastly, I am going to print cards for everyone, so I will be needing input from you all on phone numbers that you would like to have on them to go with your email address. They will have the main OCF mailing address on them, but the rest of the contact information will be unique to each of you.
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: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Brian,
I will be waiting to hear from you both !!! And I cant even imagine how busy you are !! I know I sent you my home and cell and you can use both for me .
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | 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 believe you have all of my information as well as the Gmail account I set up. Let me know if you need anything else.
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 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Brian....I have sent my personal info by PM to you. Malka, Carol (Splenda,) and I want to work as a team in Louisiana, with Malka having agreed to be the "point man." ...We are all excited about being part of this project!
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Brian,
I will resend my info by PM. Thanks to Susan for getting this going. Organizing a big event and working with state chapters at the same time is a big effort. Please let her know that we appreciate her efforts.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | 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 did send you complete info, but will resend it.
Christine
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  | | |
| Forums23 Topics18,241 Posts197,124 Members13,309 | | Most Online1,788
Jan 23rd, 2025 | | |
|
