Each year more than 230,000 Americans are diagnosed with breast cancer. 30 percent of those diagnosed will eventually progress to metastatic disease/Stage IV. Once the disease has spread it is fatal in 97 to 99 percent of cases. The non-profit organization METAvivor wants to change this dire statistic.
On May 15, 2015, the University of Colorado Cancer Center hosted a METAvivor caravan for a day of awareness and a call for increased research of metastatic breast cancer. The caravan started in Annapolis, Maryland in April and will finish in Duarte, California at the end of May with the goal of visiting with sponsors, supporters, volunteers and the researchers METAvivor has funded. Founded in 2009, the METAvivor organization defines itself as an “all-volunteer, non-profit organization that funds research, raises awareness, advocates for and provides support to people with Stage IV metastatic breast cancer”.
Lori Marx-Rubiner, president of the organization and metastatic breast cancer (MBC) survivor, was joined by Jaynie Cohen Judaken, a supporter of METAvivor, and Carrie Corey, a MBC patient who flew in from Dallas just for the event. The women spent the morning talking with Heide Ford, PhD, CU Cancer Center investigator, about the latest discoveries in her lab regarding metastatic breast cancer.
“The Metavivor provided key pilot funding to understand the role of a specific cluster of small RNAs, called micro RNAs (miRNAs), in breast cancer metastasis. MiRNAs are known to have widespread effects in cancer, and they are thought to be promising new targets in cancer therapy,” Ford explains. “Data suggests that these miRNAs may be critical for outgrowth of metastases at secondary sites, and we are now examining the mechanism by which they do this, as well as determining whether targeting the miRNAs could be a therapy to inhibit metastatic progression”.
Ford also took the women for a tour in her lab.
“I love going on lab tours the most,” says Marx-Rubiner. “It is great to hear what researchers are doing but to see it in action makes it real.”
After the lab tour numerous researchers from the CU Cancer Center joined Marx-Rubiner, Judaken, and Corey for lunch where they briefly covered the variety of breast cancer research currently going on in their labs. Marx-Rubiner then took the stage to tell her story of how she came to be involved in METAvivor and the challenges that it has faced getting funding for MBC research.
“I got involved with METAvivor in 2011, either before or just after my own MBC diagnosis. There are a number of areas of patient advocacy that are open to us, but it was METAvivor’s clear vision and research-driven agenda that attracted me,” says Marx-Rubiner. “I became president in July 2014 and look forward to leading METAvivor in its growth and outreach.”
Once she became president Marx-Rubiner was stunned to learn more about the politics of MCB.
“I was shocked to hear that only about two to three percent of funding goes to researching the disease,” she says. “There is a lack of support groups for men and women with metastasized disease. I have also found that many times calls for increased funding are turned down due to grim statistics. It seems to me that we are essentially being told to die quietly.”
But METAvivor refuses to sit quietly. The organization is the only one of its kind in the United States that exclusively funds MBC research through a scientific peer-review process. It also guarantees that all funds raised go directly to research.
“If we get two dollars that means that it is two dollars for research,” explains Marx-Rubiner. “We don’t have a brick and mortar headquarters because we want to ensure that every dollar we make benefits MBC research.”
The future of METAvivor looks bright. It has recently announced the formation of the Strategic Alliance for Metastasis Cancer Research with the Metastasis Research Society. The alliance will draw attention to the need for greater support and funding of research benefitting patients with metastatic cancer of any kind.
Marx-Rubiner, however, has additional plans in mind.
“We’d love to retire!” she says. “However, until we have rendered breast cancer a survivable, chronic disease with a good quality of life, we will be here, expanding our grant program, initiating new local support programs, and educating the public about the unique and critical needs for MBC research.”
To learn more about METAvivor please visit their website.
To read Lori’s blog about her visit please click here.