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Message from the TNBC Foundation

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hayleyd View Drop Down
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    Posted: Aug 16 2007 at 4:07am
On behalf of the Board of the TNBC Foundation, I want to thank all of you for your heartfelt messages of sympathy and support since Nancy's passing last week. As her close friends, we are all devastated by her loss. She was a beautiful woman in every sense of the word, and I cannot begin to express just how much we all will miss her.

In Nancy's memory, and with each and every one of you in mind, we are now more determined than ever to further the goals of this Foundation: to raise awareness of triple negative breast cancer and to support research targeted specifically toward this disease.

Please have faith. Remember that huge strides have been made in treating and curing other types of breast cancer. There is no reason to believe that the same kind of progress cannot be made here.

To find better treatments, we need more focused research efforts. To that end, the TNBC Foundation is co-sponsoring the 2007 Triple Negative Breast Cancer Symposium this December. Together with Susan G. Komen For The Cure, we have invited leading doctors, researchers and scientists from around the world for a "meeting of the minds." The participants were selected by our Advisory Board for their interest in, and dedication to, our cause. Together, they will explore the most promising research leads in the area of triple negative breast cancer research and develop a scientific agenda for finding effective treatment alternatives for triple negative patients.

All of us here at the Foundation are incredibly excited about this event, especially since responses from the invitees have been overwhelmingly positive. It is a significant step in the right direction and we wanted to share this good news with you.



Edited by hayleyd - Oct 15 2007 at 2:26pm
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2007 at 6:20am
This is very exciting Hayley, thank you for the good news.
Is there anything as a group we can do to help?
 
Didn't I read that you folks were selling towels at one point?
Are these still available?
 
Thanks Hayley


Edited by trip2 - Aug 16 2007 at 6:21am
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hayleyd View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hayleyd Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2007 at 7:00am
Thanks for the offer! We appreciate any help we can get. There is, in fact, something you can do: spread the word!

We think that it's very important for women suffering from this disease to know that there are significant efforts currently underway to improve their situation. There is much more awareness now than existed even a year ago. We feel that this Symposium will give both direction and focus to the research community and results will follow.

As soon as all the details are finalized, we will publish more information on the website. In the meantime, please spread the word. If women suffering from triple negative breast cancer are more aware of the efforts being made on their behalf, they will find it a little easier to stay positive and cope.

Thank you in advance for your efforts.

Hayley
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2007 at 7:21am
You are right Hayley, this foundation does give hope and I will continue to spread the word, you can count on that.  When I learned of this foundation I thought "finally" as a group  we can gain strength and knowledge, a louder voice and hopefully answers to our type of breast cancer.
 
We will all look forward to the details of the upcoming symposium.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2007 at 1:07pm
Hi Haley,  I know we get lumped in with all the other bc's,  Has anyone thought about shirts that differentiate us in the Race for the Cure??  This would also help us spot each other in our local areas.  I'm thinking pink with black stripes or 3 X's or "Triple Negative, Don't Leave Us Behind!"  Any thoughts?
 
Best Wishes
 
Ronda 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hayleyd Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2007 at 1:27pm
Hi Ronda,

Good question . . . I think it's something to raise with Komen since "Race For The Cure" is affiliated with Komen. In fact, this year the Komen Foundation officially changed it's name to Susan G. Komen for the Cure.

We are now in regular contact with Komen so I will bring it up and let you know their response.

Thanks for the suggestion.

Hayley
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2007 at 1:32pm
That is so wonderful that you have regular contact with Komen since they have such a well known breast cancer orgainization huge in the fight and international, congratulations!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Syppie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 6:25am
Haley
 
I am new to this site - thankful I found it!  I am really thankful for everything you guys are doing.   I think it is great!  I will help spread the word.  I am willing to help in any future fund raising -- I think we need to do all we can so more women are not in our shoes.    Afterall, I thought I was young and healthy...and doing all the right things.  No one knows. We really need to find the cause of this devastating disease in young women.  We can not continue to have our children without their mothers.  Can we do a two day walk or something?  Or, can we contact the three day walk organization to see if we can raise money for research into the triple negative BC specifically?  I am doing their 3 day walk in 2008 and would love to know that I am raising money for triple neg research.
 
Can we, the survivors, attend the San Antonio Breast Conference or does one have to be in the med field?  It would be nice to have a group of TN's attending.  I would love to meet some TN women as everyone I meet has the "garden variety". 
Debra
 
 


Edited by Syppie - Oct 15 2007 at 11:23am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 11:53am
Hi Syppie,
 
Andrea (Board Chair) posted the info on the "Symposium". It is not open to the public, and I know that we all wish it was. Just look under the post titled Symposium, on page 2 of the TNBC Talk.
 
Nancy (Lori's Mom)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Syppie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 1:13pm

Nancy

Thank you for your response.  I will look forward to hearing what comes out of the San Antonio Conference.  I'm sure my onc is attending.   I will stay on him as well. 
 
Hope Lorie is doing well.
 
Debra (Syppie)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hayleyd Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 2:15pm
Hi Debra,

I am so happy that you found us! The women on our forums are absolutely amazing . . . they are so supportive of each other and always willing to offer advice. I'm very confident that you will find the support system you need here.

I also want to thank you for your offer to spread the word in your community and to help raise funds. So many of the women on this website have similarly offered their help, and we are in the process of looking into how best to advise you. There are a few legal issues that need to be ironed out before we can make recommendations.

Before I answer your question regarding the symposium, I'd like to make sure that we are discussing the same event! First, there is the San Antonio Breast Cancer Symposium (SABCS)- an international symposium directed primarily towards academics, private physicians and researchers involved with breast cancer. The SABCS will explore all types of breast cancer. You can learn more about it at http://www.sabcs.org.

Additionally, the TNBC Foundation (along with Susan G. Komen) is sponsoring the first Triple Negative Breast Cancer Symposium. It also will take place in San Antonio, just before the SABCS.

Our hope is that the TNBC Symposium will lead to a better understanding of triple negative breast cancer and, eventually, to the development of effective treatment options. To that end, we have invited a select group of leading oncologists and researchers to focus exclusively on triple negative breast cancer and to explore the most promising avenues for future research. Essentially, the symposium is a “think tank” and attendance is limited to these doctors and researchers. Personally, I think the closed format will allow the attendees to focus and brainstorm in a way that would not be possible in a different environment.

That said, following the symposium, we will be publishing a white paper – an authoritative report detailing the findings/results of the symposium – so the information will be available to you. We’ll be sure to let you know as soon as it is published!

I think it’s wonderful that you are actively seeking out opportunities to learn more about triple negative breast cancer. The more you know the better equipped you’ll be fight this awful disease.

And again, thank you for your interest and for your dedication to our cause. Please let me know if you have any other questions or concerns.    

Hayley Dinerman
TNBC Foundation
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 4:31pm
Dear Hayley, this is so wonderful.  I eagerly look forward to the white paper.  Thank you for your efforts on our behalf and in memory of Nancy. 
 
Love and hugs,
 
Lisa B.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Skippy123 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 5:14pm

Hayley and TNBC Board,

Please, please, please keep working on our behalf!  At this time, you all appear to be the only organized group advocating on our behalf in the breast cancer community.  I think I speak for many of us when I say how frustrating it is for tnbc survivors to find answers from our health care providers.  We're starving for information.  That is clearly evident from the Discussion Forum Topics.  You are already aware of this through your experiences with your dear friend Nancy. 

I am appalled that one of the symposium's objectives is to continue to build awareness of tnbc.  The fact that some oncologists and researchers are unaware of tnbc is not comforting.  It scares me to death to know that in December of this month leading breast cancer researchers and doctors will come to the table to hopefully begin a journey to find an effective treatment/drug for receptor negative tumors within the next 5 years or so.  Where was the round table think-tank discussion 2-3 years ago?  Or, why hasn't there been other major discussions and a plan of action for tnbc treatments?  Again, this is probably a feeling you have experienced through Nancy. 

So, we are where we are.  undoubtably your passions come from the same feelings of frustration and despair watching Nancy succomb to a disease we're still trying to figure out.  Again, thank you for your continued work in this area.  Your committment for continuing these efforts were evident during the Mike and Juliet broadcast.  You guys are all young and beautiful, and I'm glad you're standing in my corner!

I'm looking forward to hearing about progress made in December. 
 
 
Lots of love!!!
Skippy in Austin

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 5:36pm
Dear Haley,
 
On behalf, and for the love of our daughter Lori and for our entire family, I echo what Skippy has written. When Lori was dx, and I started researching, I was devastated. TNBC...the deadliest form of breast cancer. Not one person I spoke to had ever heard of TNBC, and the answer was always the same..."I have friends who were dx 10..20 years ago and they are just fine". Well, guess what? They didn't have TNBC. From my research, I have made everyone I know aware of TNBC and this Foundation.
 
Please continue to do whatever you can to make all the world aware of this type of breast cancer. When you need help...just ask! I will be there. They must find the treatment which will ensure that my daughter will live many many years after I am gone.
 
Thank you for what you have accomplished in such a short time. If it weren't for this site and the amazing women here, I do not know what I would have done.
Many Hugs,
Nancy
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2007 at 5:10am
I ditto the previous comments.  It bothers me so much that there isn't more out there about triple negative breast cancer.  And three years ago when I was first diagnosed, no one even knew about such a monster.  I also get very frustrated when I see people on TV or hear about women who have had breast cancer and are fine now.  Most of them, I personally believe, are not triple negative.  I am not saying I am not happy that they are fine, but I also wish more were being done to get to the bottom of this beast.  My oncologist has me on a chemo regimen of Carboplatin soon to be followed with Gemzar.  He told me this is the latest and greatest for TNBC.  I remember him specifically saying that the platinum-based drugs were doing very well in the fight against TNBC.  But we need more - we need something that will give us a better guarantee of NED.  I am so glad this organization is here and once again, I commend you and thank you from the bottom of my heart for all you are doing for us.  I am anxious to see what the results of the symposium are and I so hope there is a cure for us soon.  God bless all of you.
 
Love and hugs, Lisa B.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Syppie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2007 at 4:33pm
Hayley
 
Thank you for your quick response.  And we thank you oh so much for everything you guys are doing.  I am so so sorry to hear about your friend Nancy.  I will keep all of you and her family in my thoughts and prayers.  I'm sure she is very proud of what you, her friends, are doing in her memory.   Girlfriends are the best.  I just want to say that I am anxiously awaiting to hear how/when we can begin raising $$ to direct more research to TNBC.   I just attended a BC fund raiser today and most people I talked to had never heard of triple negative.    Former NFL player Chris Spielman and his wife Stefanie spoke at this fund raiser and they are absolutely amazing too.   They provided us with a very powerful message.
 
I look forward to all of us from this forum meeting one day.  So I close with another thank you...thank you...thank you to the TNBC Foundation!     
 
 Debra
 
PS - I just had a thought and want to run it by you before I act on it.  Can I print up business cards and flyers with your website on it and take them to cancer centers and have oncologists pass them out to their TN patients.  I am not far from Duke, Wake Forest, UNC and I would love to get the word out so when we can start raising money, we may have alot of people on board with us.  I would like to talk to some of these oncologists to see what we can do to get research going for TN. 


Edited by Syppie - Oct 17 2007 at 5:22am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Admin Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2007 at 6:20pm

To all of the amazing women on this forum,

As one of the members of the TNBC board and the producer of the website (along with my webmaster husband, Ken) I just want to say that reading your posts is all of the thanks we need. All of you have made this forum far more effective than even we could have imagined. We are just thrilled with the way you are sharing important life changing information with each other. Please keep up the great work.  And Debra, I think it is a great idea for you to print cards and flyers with our website to give to TNBC patients. Our goal is to help as many people as possible and we welcome any help you all want to give.
Thank you again.
Sharon
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