A Message from METAvivor’s New President

Recently, Dian “CJ” Corneliussen-James, co-founder of METAvivor.org, stepped down as President. We will continue to benefit from her passion and commitment as she serves in her new role as Director of Advocacy. We are pleased and fortunate that Kelly Lange stepped up to become our new President. Here is a message from Kelly to all our friends and supporters.

I am honored and humbled to accept the position of President of METAvivor Research and Support. As I look back on the founding of our organization, I am amazed at what has been accomplished by CJ, Avis, and their co-founders. These women were appalled at the lack of support and funding for metastatic breast cancer, and decided to do something about it. It took two years to establish the organization and raise enough money to award the first research grant. That first $55,000 was difficult; the yard sales, raffles, and concerts were time consuming and sometimes disappointing. But our founders (and their families) persevered, in spite of dealing with their own MBC.

Because of the hard work of our founders and early members, I find myself at the helm of a vital national organization. I have heard from many of you that our work to fund MBC research is critically important. As you and your supporters spread awareness of the MBC/BC research funding discrepancy, donations to our research fund have significantly increased. In 2011 we awarded two grants totaling $75,000 grants, and in 2012 we were able to increase that to three grants totaling $125,000. I am thrilled to announce that we anticipate awarding grants totaling at least $250,000 in 2013!

As I look forward to an exciting year, I am saddened that two of our co-founders, and many of our early members, are no longer with us to see the remarkable success that CJ and her team have achieved. METAvivor will continue our work to advocate that 30% of BC research dollars be dedicated to MBC research. We will continue to work hard to ensure that 100% of all donations to METAvivor will go directly to our research fund. We have secured sponsor funding for our minimal operating expenses, as well as for two of our three annual fundraisers. We are planning for the growth of our organization in the coming years, and will be launching a new awareness campaign in the coming months.

I am very grateful for this opportunity. Every time I lose a friend to MBC I reaffirm my commitment to this ending this horrible disease. I pledge to you that I will do my very best to lead METAvivor towards that goal.

~ Kelly Lange

You may contact Kelly at kelly@metavivor.org.


Promoting Metastatic Breast Cancer Awareness

A New Way to Promote Metastatic Breast Cancer Awareness
by the METAvivor Team

Many people are trying to get the word out on Metastatic Breast Cancer. One supporter came up with an ingenious idea that all began when she went to the grocery story. Here’s her story.

At the end of September I went to a local store and they were totally decked out in pink – ready for the Pinktober onslaught. My first thought was, “I won’t be able to come to this store for the whole month of October.” I knew they would be asking for money for awareness, for research and to support non-metastatic survivors. But knowing what I know about stage IV and the lack of funding and support for our disease, I knew I would not be able to keep my mouth shut. And the total lack of estrogen in my body can be verbally ugly.

When I got back home, I saw the MBCaware site and realized that I could be proactive. I made a business card based on the MBCaware site to use as an introduction to the “rest of the story”. I decided to use the card instead of exploding in some stranger’s face. So you might say that I generated the “business card” from the “Elephant in the Pink Room” campaign strictly for self-preservation reasons.

I did go back to the “pink” store. After a young female manager gave a pep talk over the loud speaker about donating to “pink” (not kidding), I calmly approached her and handed her a card. I briefly told her about the 30% of women who reach stage IV and the paltry 5% of funding for stage IV in the western world that is shared by all metastatic cancers. She said she didn’t know! I asked her to go to MBCaware.org and read about the rest of the pink story. She said she would do it … and I felt better. I did the same thing at the pharmacy. At the drive-in window the pharmacist was all decked out for Pinktober. I commented on her attire. She boasted how supportive she was of everything pink. I returned my clipboard with an MBCaware card while mentioning that she could learn the rest of the story by going to the website. She accepted it with great enthusiasm!

We think this is a great idea. Our team is now using it and we hope you will too! We welcome other stories on how people are getting the word out on metastatic breast cancer. Email your stories to cj77@comcast.net or kk@metavivor-blog.com. Be sure to let us know how or if you wish to have your name associated with your story article. We look forward to hearing from you!

The card layout has been optimized for easy reading and can be copied and pasted into any 3.5” x 2” business card template. Here are links to a downloadable PDF or JPG copy of the above image that will fit a business card template; just click on either link and save the PDF or JPG to your computer: MBCaware Card PDF, MBCaware Card JPG. When you click on the JPG link, once it comes up, right-click on it & select ‘Save picture as…’ to get it on your computer.


Steering the ‘Race’ Back on Course

Bobby Labonte's Nascar for a Komen fundraiser

Thirty years ago this month, the Susan G. Komen Breast Cancer Foundation (now Susan G. Komen for the Cure) was founded. This October will mark the 27th National Breast Cancer Awareness Month. It has been 20 years since the now-ubiquitous pink ribbon first showed up at Estee Lauder cosmetic counters. Thirty years of breast cancer activism and awareness-raising. Thirty years and counting … but counting what?

Profits from pink merchandise have grown exponentially in those years, but the number of annual breast-cancer deaths in this country still hovers around 40,000, a number similar to 1980, the year Suzy Komen died. Plenty of money is being raised in the name of breast-cancer awareness, and there is seeming agreement on the ultimate goal of ending breast cancer. Follow the money trail, though, and it is disheartening at the least and downright troublesome at the most.

Hundreds of breast-cancer charities are doing honorable work, but others are exploiting this emotionally charged cause to line their own pockets. Let the buyer beware. Read the small print before enthusiastically buying a product adorned with a pink ribbon and patting yourself on the back for contributing to a worthy cause. Your contribution may never make it to anything close to helping the cause.

Even Komen, the largest organization in the breast-cancer movement, has some disconcerting financial statistics. When research holds the key to finding breast-cancer causes, prevention and cures, Komen only sent 19 percent of its massive funding to this crucial area in 2010 and 15 percent in 2011.

Both metastatic breast cancer (the cancer that kills) and ductal carcinoma in situ (considered the earliest form of breast cancer) — are key research areas. Figuring out the mysteries of metastatic disease will save lives, and unlocking the secrets of early stage cancer will save many women agonizing decisions.

There is no denying the impact SGK for the Cure and other groups have had in helping bring breast cancer beyond hushed tones to the necessary vocal discussions. But the pendulum has swung too far and needs equilibrium. We don’t need another pink-lit monument or bridge; we need better imaging techniques. Not another pink item to purchase this October; rather, more research subjects and dollars. No more sexualizing and corporatizing of breast cancer; instead, concerted energy directed at the goal of ending this disease.

Mammograms have long been the standard in the detection of breast cancer, but they are lacking in overall effectiveness. We need enhanced imaging techniques with more consistent results. Pink vacuums and mixers seem supportive, but why not put that money directly into research vs. a small percentage of it, if any at all? “Saving second base” and “Save the ta-tas” sell merchandise, but they also reinforce stereotypes and degrade women. Aren’t we trying to save lives?

The noble promise Nancy Brinker made to her sister Susan Komen began a movement that initially generated positive energy in the right direction. The pendulum was swinging toward the middle after decades of Halsted radical mastectomies and breast-cancer patients silenced by the disease and by society. Unfortunately, money weighted the pendulum, and it swung too far the other way. Breast-cancer awareness is now a business, a big business. Pink fatigue is sucking energy away from the focal point of putting breast cancer out of business.

Can we bring the pendulum closer to the middle before another Pinktober rolls around? It starts at the individual and grass-roots levels. Be aware of what you are buying and whom you are contributing to. Check out Breast Cancer Action’s Think Before You Pink campaign.

Consider donating to METAvivor.org, a group that puts all donations into research grants to study metastatic disease. Women, please consider joining Dr. Susan Love’s Army of Women. This army helps researchers find subjects in months instead of years, and they need both women who have had breast cancer and those who have not. Men, encourage the women in your life to join this army.

Where will we be 30 years from now? We can each affect that answer with our individual choices, including the organizations we choose to support, starting now.


Lisa Valentine, of Hastings, is a school counselor.

This piece was first published the Minneapolis Star Tribune on July 11, 2012 under the title, “Keep the race moving toward the cure.”

For more about how breast cancer awareness fundraising has strayed off course — and how to steer it back — you may want to look for a screening of the documentary film Pink Ribbons, Inc.. A current list of public screenings is here, or you can obtain a DVD copy by donating to Breast Cancer Action. Here’s the trailer below. I saw the film recently. The small group of women you will see being interviewed a few times is a support group for women with metastatic breast cancer. They are incredibly articulate in this film.

~ Kathi



Just copying this status update from CJ on METAvivor’s Facebook page:

‘The Pinkwell winners were announced today. Since we had predicted that we would earn at least $45,000 during the contest — and we did, we earned an incredible $206,000 — Pinkwell will award us $45,000! Thanks so much for everyone’s support. Our research fund keeps growing with your help.’

I don’t have all the details, but what I believe this means is that each organization in the PinkWell challenge had to set a fundraising goal to be reached by the end of the contest, and that some of the PinkWell grants would be based on which groups met those goals. The goal set by METAvivor was to raise $45,000. Which means that it is indeed ‘incredible’ that METAvivor earned $206,000 by the time the contest voting was closed! And for that, PinkWell matched our goal by awarding us an additional $45,000. As I get more details from CJ, I will update this post.

CJ is at ASCO this weekend, which is the Annual Meeting for the American Society of Clinical Oncology. The meeting program is here: ASCO Connection. More to come on this, I’m sure.

In the meantime, I know that CJ and everyone would join me in thanking all who voted for METAvivor and helped us win this grant. From our main site:

The METAvivor Research Program was established in 2009 with the singular goal of funding research to end death from metastatic breast cancer (MBC).[...] METAvivor is the only US non-profit awarding research grants solely for metastatic breast cancer. The organization is run entirely by volunteers, the majority of whom have the disease.

You may read about the research grants we have previously awarded here: METAvivor’s Research Grants.


~ Kathi