METAvivor was officially founded in 2009 by four women — Avis Halberstadt, Karen Presswood, Rhonda Rhodes, and Dian “CJ” Corneliussen-James — who had all been diagnosed with stage 4 metastatic breast cancer, a stage that, while treatable, is not curable.
The four founders came up with the name “METAvivor,” a blend of “metastatic” and “survivor,” to describe the uniqueness of their situation.
“They did not feel like the term ‘survivor’ really described their journey, since the metastatic breast cancer would eventually take their lives,” says Sonya Negley, the executive director of METAvivor.
The organization's mission was originally to offer community and support for other women with metastatic breast cancer. But when the founders learned that there was also an extreme lack of funding for research on metastatic disease, METAvivor added funding for advanced disease to their mission.
“A lot of organizations said they were raising money for the cure, but in fact, the research funding was going to prevention and early-stage breast cancer research,” Negley says.
Today, CJ is the only surviving founder of METAvivor. The organization continues to serve as the predominant community resource for women with metastatic breast cancer, and still financially supports research on this disease.
“METAvivor is a patient-led organization that works very hard to end death from metastatic breast cancer,” Negley says. “We are devoted to metastatic-breast-cancer-specific research and put 100 percent of every donation towards funding that research.”
Their goal By funding research, raising awareness, and providing community support, METAvivor hopes to play a role in converting metastatic breast cancer from a terminal disease to a chronic one and to “improve the quality of life for those living with metastatic breast cancer,” says Negley.
Their services METAvivor offers several services for members of their community. The organization invests heavily in their peer-led support groups, and offers leadership training all over the country. Currently, METAvivor has 120 peer support groups, which represent more than 3,000 people who have been diagnosed with metastatic breast cancer.
“METAvivor trains peer leaders monthly, gives them materials to start groups in their own communities, and then provides support to augment their meetings,” Negley says.
The organization also has a program called Sea to Sea for MBC Advocacy, through which patients with metastatic breast cancer and their supporters travel across the country to raise awareness about this disease, with a focus on underserved communities. They meet with researchers, educate other patients and supporters, and teach patients how to best advocate for their health and treatment.
For the year 2021–2022, Sea to Sea for MBC has gone virtual. You can check out the program’s most recent interviews with doctors and oncologists from all over the United States on METAvivor’s YouTube channel. You can also find even more patient and supporter resources on the organization’s website and Facebook page.
Events This year, METAvivor is hosting three fundraising events, called Metsquerades. All the donations from these events will be put toward funding research on metastatic breast cancer. Their first event will take place in Pittsburgh this April, and their next two will be held in Florida and North Carolina toward the end of the year.
You can stay up-to-date on METAvivor’s Pittsburgh Metsquerade on their Facebook page and keep up with all of METAvivor’s upcoming events on their website.
Core beliefs Negley says that METAvivor's core values are, “compassion, inclusion, and persistence on mission.”