A colleague describes how a woman who was diagnosed with breast cancer that later metastasized felt a lack of support and research, leading her to launch support programs for other patients and step into the advocacy field.
After her 2004 stage 2 breast cancer metastasized to her lung in late 2006, Dian “CJ” Corneliussen-James, a newly retired Air Force and civil service intelligence officer, was shocked to learn that there was not only a dearth of support for patients with stage 4 disease, but, more critically, virtually no research being done for stage 4 cancer.
Within weeks of her diagnosis, she launched a support program that six months later had 24 members. Soon she was training others to build similar programs in their own areas. Today, her peer-to-peer support program has over 100 groups nationwide. But this was just the beginning.
In 2007, CJ learned that less than 0.5% of the National Cancer Institute’s $5 billion budget was going into stage 4 cancer research. She further learned that breast cancer nonprofits were, at best, devoting a paltry 2% to metastatic breast cancer research. Shocked, she designed the metastatic breast cancer ribbon pin to raise awareness and began raising funds for research. She learned about and contacted the president of the Metastasis Research Society, Danny Welch. And together they began making plans.
Attending her first Metastasis Research Society biennial conference in 2008, CJ learned about the challenges researchers face and the lack of funding for metastatic cancer research. Returning to Annapolis full of ideas, in January 2009, CJ asked three other support group members, math teacher Avis Halberstadt, award-winning CVS pharmacist Karen Presswood and Silopanna CEO Rhonda Rhodes to join her in founding the nonprofit METAvivor Research and Support to fund metastatic breast cancer research. The team quickly set the policy that 100% of every donation would go into the research fund. This policy continues today.
CJ’s reputation as a patient advocate for her disease was rapidly spreading. In 2008, she began working with pharmaceutical companies who valued her input on their written products and website development. Starting with Novartis, where she was contributing editor and reviewer for its patient advocate guide, her inputs were soon requested by Eisai, Genentech, Pfizer, AstraZeneca, Eli Lilly and others where she served on advisory boards, wrote and/or edited articles for publication, participated in satellite media tours, gave numerous presentations and was profiled in a widely used motivational film by AstraZeneca. She also began working with organizations such as We Work for Health.
Meanwhile, with the help of Welch and others, CJ put together a research program that in January 2010, one year after METAvivor’s founding, awarded its first research grant of $50,000. Tragically, by then two of the co-founders, Presswood and Rhodes, had died of metastatic breast cancer. More joined the team and more died. Halberstadt passed away in 2014. For some it was too much death, but CJ would not give up.
In 2011, CJ’s poster on metastatic breast cancer patient lifestyles and needs won first place for patient contribution at the first international Consensus Conference for Advanced Breast Cancer (ABC1) in Lisbon, Portugal. CJ served on faculty for the ABC conferences from 2012 through 2017. In 2015, CJ gave the widely praised keynote address “Prejudice and MBC” and presented on “Sexual Intimacy and MBC” at ABC4. She was also invited to Madrid, where she discussed her patient program with directors and oncologists at the Clara Campal Cancer Center and addressed medical students at the medical school.
After serving five years as president of METAvivor, CJ passed the hat to a successor in 2015, but twice stepped back in for one year when a need arose.
CJ continues to do presentations, answer calls and emails, research related subjects and respond to patient queries on a host of issues. She has put out the word that she will do her best to assist anyone wishing to start a research funding program for their own metastatic cancer type and was recently asked to help build a program in the Middle East.
The METAvivor grant program has exceeded expectations. As of 2020, METAvivor had awarded 135 research grants totaling over $18 million. This year, it will award over $4 million more. While many have taken up the cry for increased stage 4 research, METAvivor remains the sole U.S. (perhaps world) organization dedicated to awarding annual metastatic breast cancer research grants through a peer review process.
CJ was awarded the Service Above Self award and made a Paul Harris Fellow by Rotary International in 2013, was awarded the Fire and Soul Award by Anne Arundel Medical Center in 2010 for being “the one to take a spark of energy and with determination turn that vision into reality” and in 2019 was a finalist for the National Catalyst for Change Award. CJ graduated from Project LEAD in 2009 and served as a consumer reviewer for the Department of Defense Breast Cancer Research Program in 2010 and 2011.
Beginning with CJ’s proactive stance over 13 years ago, immense strides have been accomplished. CJ is certainly one of the most influential and fierce champions of finding a cure for metastatic breast cancer and is imminently qualified for and deserving of recognition through this important new national Metastatic Breast Cancer HeroesTM award.
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