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Alternatives to supporting Komen

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mainsailset View Drop Down
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    Posted: Feb 19 2012 at 12:53pm

With the implosion of Komen it seems to me all the more necessary to return to the original battle that Komen stood on the front lines for...take care of our own and fight like crazy to cure breast cancer.

In that regard, I'm even more determined now to dust myself off and return full force to the goal of taking care of our own and promoting research to end the existence of breast cancer. But of all the people on earth, certainly those in the TN family know that sitting on our hands is not an option.
 
So, I would as for ideas of places, organizations, research facilities or just local lemonade stands that you are aware of to bring them to the family's attention here so that we can support them.
 
Dearest to my heart and I'm sure yours is the support that we can give first and foremost to the Triple Negative Breast Cancer Foundation.
 
Mainy
 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2012 at 6:34pm
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Here's one charity where 100% of the funding from Pedal The Cause will provide life-saving research and cures for cancer patients.  Note - this supports all cancers, not just breast cancer.  Interesting they were careful not to use the word "for the cure", but instead "the cause".  It will keep Komen from coming after them with their litigation lawyers.






Project: Investigations of HER2 Mutation in HER2 Negative Breast Cancer
Principle Investigator: Cynthia Ma, MD 
Description: In patients with HER2 positive breast cancer, anti-HER2 drugs, including trastuzumab (Herceptin) and lapatinib (Tykerb), are readily available and used with good results. However, these drugs are not FDA-approved for HER2 negative breast cancer. This two-part project seeks to establish that this subset of HER2 negative patients can be effectively treated with anti-HER2 agents. If successful, the results will lead to further, larger trials and, some day, treatment access for all patients with this type of breast cancer to the increasing numbers of anti-HER2 medications.

Triple Negative Trials 


Edited by 123Donna - Feb 28 2012 at 7:57am
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2012 at 8:20am
I've been looking at causes near and dear to us.  First in my heart is the Triple Negative Breast Cancer Foundation.  Maybe this is being selfish, but I want my money going towards finding a cure or targeted therapy for TNBC.  Maybe if we could post a list of research specific to TNBC and the institutions performing them.

I found this other organization:  Stand Up To Cancer.  I like their goal and they say 100% of the proceeds goes to collaborative research.  What do you think or know about this group?


SHORT MISSION

Stand Up To Cancer is a new initiative created to accelerate groundbreaking cancer research that will get new therapies to patients quickly and save lives. SU2C's goal is to bring together the best and the brightest in the cancer community, encouraging collaboration instead of competition. By galvanizing the entertainment industry, SU2C creates awareness and builds broad public support for this effort.


This is where the end of cancer begins.

http://www.standup2cancer.org/resources/cancer

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2012 at 9:40am
Here's a link to the Breast Cancer Research Foundation of Alabama's donation to our local UAB Comprehensive Cancer Center.  In my experience, BCRF does a wonderful job of raising money for research without so much top heavy expense going to executives and advertising and other stuff not related to research.  I assume most, if not all, states have BCRFs.  In Alabama, the money raised here stays in-state.  Probably true for other BCRFs too. 
 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2012 at 10:42pm
What do you think to this new approach?


Institute to Speed Up Cancer Drug Development

Network - Winter 2012

Giulio Draetta, 
M.D., Ph.D.

A major new research institute at MD Anderson will blend the best attributes of academic research and the biotech industry to identify and test new cancer targets, convert scientific knowledge into new cancer drugs and advance these drugs through innovative clinical trials. Researchers will also investigate complementary diagnostics for cancer patients via multidisciplinary collaboration.

Lynda Chin, M.D.

The new Institute for Applied Cancer Science will be led by Giulio Draetta, M.D., Ph.D., and Lynda Chin, M.D. Its goal — building an “expressway” for speedier drug development — would be impossible without the strength of MD Anderson’s 18,000-member workforce, notes Ronald DePinho, M.D., president.

“It’s a great day for cancer patients and a dark day for cancer,” DePinho said at the institute’s announcement in late November.

http://www.mdanderson.org/publications/network/issues/2012-winter/institute-to-speed-up-cancer-drug-development.html

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2012 at 8:48pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2012 at 9:08pm
Here are the specifics on the TNBC Foundation

http://www2.guidestar.org/organizations/20-5880756/triple-negative-breast-cancerfoundation.aspx
http://www.tnbcfoundation.org/TNBC%20-%202010%20Form%20990.pdf

On revenues of $473k, the TNBCF supported $300k in research (63% of income; much better than the 15% ratio at SGKF).  So you could do worse than supporting the TNBC Foundation.

David


Co-survivor
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2012 at 9:38am
Re: New institute at MDA.

There is a definite need for more depth and breadth in the drug pipeline for testing in the clinical setting. Big Pharma is no longer doing their own R&D -- preferred approach is buyout of biotech companies with potential blockbuster drugs. My guess is that at MDA, as elsewhere, academic researchers developing potentially important therapeutics will form their own biotech spinoffs with licensing agreements with MDA. 

Is this model going to be better? I don't know.  Who's going to do the actual drug development?  There is a huge gap between finding something novel in the lab and bringing it into a trial setting. You need experienced medicinal chemists, pharmacologists, toxicologists for conventional small molecule drugs, you need a whole different team of people if you are developing biologics.  Not to mention pre-clinical testing.  Some of this can certainly be done within a research institute - but all of it?

I also have ambivalent feelings about academic researchers who use federal funds (your tax dollars and mine) to develop the infrastructure for drug development and then try to profit.  Although MDA was set up as part of the UT system, it is a hospital and has had its share of controversy when it was discovered it had private deals with investors.

Finally, how will other institutions (cancer centers, hospitals, private practices, universities..) be allowed access to all the discoveries from MDA? Also note that DFCI's Belfer Institute predated MDA's new institute (in fact headed by the same leadership that got recruited to MDA).

ps -- if the new model involves MDA working with corporate partners from the getgo, how will that influence ethics and accessibility?


Edited by Lee21 - Mar 03 2012 at 9:45am
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2012 at 11:18am
Lee,

Thank you for your excellent and insightful comments.  I think you raise some good questions, concerns and caution about this new model.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Mar 08 2012 at 10:30pm
I saw this video today and absolutely loved it. There is research going on and there is hope:

http://www.youtube.com/watch?v=26yE5ACnDHI&feature=youtu.be

I decided to put it here as someone had mentioned Stand Up 2 Cancer as an alternative.

Best to all,

Natalia
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2012 at 7:57pm
Has anyone heard of this organization?


General Support

Triple Step Toward the Cure provides both general and financial support through its Community Resource Program for women diagnosed with triple negative breast cancer and their families.


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2012 at 8:41pm
Hi Donna and All,

Have heard of triple step toward the cure.
In Dec 2011, I posted on thread "financial support" the web site for triple step.
Per their website: O.I. Olopade MD from the University of Chicago and 3 MD's from Stanford
Cancer Center are on the group's medical advisory board. Their partners include the
Stanford Cancer Center and the University of Chicago and others.
At that time, I called them. They said "financial support" was available for TNBC nation wide....
one did not need to be from California.
When I spoke with them last Dec., I mentioned the TNBC Foundation website and that there was
a lot of info and resources on this website.
From their website:
   Financial Support
Triple Step Toward the Cure endeavors to provide support to women as they undergo treatment for triple negative breast cancer. We understand that the financial aspects of life can be a heavy burden when facing treatment. To offset these strains and to allow women to focus on getting well, we have established a financial support program for women diagnosed with triple negative breast cancer. Some of the areas in which we provide financial support include, but are not limited to:
      Meal Delivery Services                                              (Some services available only in certain locations)
      Emergency Funds for Rent, Groceries, Utilities
      Transportation related to treatment
      Housekeeping Services
      Childcare
      Selected Co-pay Assistance
      Prosthetics & Wigs
Interestingly, I called them last week for general info to find out if their financial support would
include BRCA testing......left a voice message......awaiting a call back.    When I get that info,
will post.

With caring and positive thoughts,

Grateful for today..........Judy


Edited by Grateful for today - Mar 13 2012 at 8:43pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2012 at 9:08pm
Hi Donna,

I met Lori Flowers, Triple Step's CEO at the C4YW conference as they had a booth there. She was really nice and explained to me that while TNBC Foundation focuses more on research they focus on helping out people going through TNBC. She told me basically what Judy posted which is the info on their website. Again, she is really nice and seems interested in helping out people with TNBC so maybe folks here will find their website and organization helpful.

Best,

Natalia
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 9:41am
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2012 at 7:07pm
Breast Cancer Research Foundation
Currently, 
more than 90 cents of every dollar donated to the Foundation goes to breast cancer research grants 
and awareness programs. 



Comment:  We had an old car we wanted to get rid of and donate to charity.  We donated to BCRF.  (I had contacted the TNBC Foundation and Stand Up to Cancer, but neither of them are able to accept vehicle donations at this time.)  I contacted BCRF and they quickly called me back.  
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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