Our audience is hungry for information and interactions with people in the know about triple-negative breast cancer.
Hayley Dinerman, Cofounder and Executive Director of the Triple Negative Breast Cancer Foundation, remembers how she and a group of close female friends first learned about the devastating effects of triple-negative breast cancer.
It was 2005 when these new mothers, who had recently formed a playgroup for their young children, learned that their friend Nancy Block-Zenna had triple-negative breast cancer, which accounts for about 15% to 20% of diagnosed breast cancers. Triple-negative breast cancer is a fast-growing cancer, more likely to recur and spread to other organs than other types of breast cancer.
“Nancy came to the playgroup one day saying that she found a lump in her breast,” Ms. Dinerman said. “We didn’t know anything about triple-negative breast cancer. We did know breast cancer is curable if found early, but we didn’t understand the gravity of triple-negative breast cancer.”
The concerned friends went online for more information and had difficulty finding resources.
“We found [Eric P. Winer, MD,] of the Dana-Farber Cancer Institute, mentioned in an article, and decided to send him an email to learn more,” Ms. Dinerman said.
Dr. Winer responded immediately. This initial correspondence lead to a long-term partnership, with Dr. Winer helping the group form the first foundation to raise funds and awareness, underwrite research, and support patients and caregivers who are faced with triple-negative breast cancer.
A Foundation Built on Friendship
The Triple Negative Breast Cancer Foundation was founded in 2006, with Ms. Block-Zenna named as the honorary founder.
Initial funding for the foundation was raised in a grassroots fashion. When Ms. Block-Zenna believed that part of her breast cancer treatment would not be covered by insurance, her friends rallied around her. They created a “peace, love, and cure” campaign to raise funds by producing and selling beach towels printed with a peace sign, heart, and pink ribbon. The campaign raised $8,000.
When Ms. Block-Zenna’s insurer unexpectedly covered the treatment, the group wanted to honor the promise to the donors that their funds would help patients with triple-negative breast cancer. The group applied the money as seed funding for the Triple Negative Breast Cancer Foundation.
“The cause resonated with a lot of people,” Ms. Dinerman said. “They were moved to support the fight against an aggressive breast cancer that tends to strike younger women.”
Sadly, Ms. Block-Zenna passed away in 2007 at the age of 37, only 2 1/2 years after she was diagnosed. Her devastated family and friends renewed their resolve to help those affected by this aggressive disease .
Dr. Winer, along with Lisa A. Carey, MD, of the University of North Carolina, Chapel Hill, and George W. Sledge, Jr, MD, of Stanford University, formed the foundation’s first Scientific Advisory Board. The first triple-negative breast cancer symposium, held in 2007, was attended by 35 researchers from around the world and led to the first white paper on the state of triple-negative breast cancer.
Today, the Triple Negative Breast Cancer Foundation provides funds and services for researchers and patients, including symposia, CME courses, research grants, webinars, and teleconferences on the latest treatments, and an online discussion forum for patients. The foundation also provides grants to help patients with treatment-related transportation and childcare costs.
“We offer a telephone helpline staffed by oncology social workers specially trained to deal with triple-negative breast cancer issues,” Ms. Dinerman said. “We have heard from our community that a triple-negative breast cancer diagnosis can be isolating, as other groups do not typically gear the information on their sites specifically to triple-negative breast cancer. On our online discussion forums, patients can speak with hundreds of people who are going through what they are going through. They get not only peer support, but also practical information on managing side effects and other specific information related to diagnosis and treatment.”
Partnership With the Conquer Cancer Foundation
The foundation frequently collaborates with other organizations, including Living Beyond Breast Cancer, which is hosting a conference in Denver in Fall 2015. The Triple Negative Breast Cancer Foundation’s role is providing expertise in support of the conference’s triple-negative breast cancer track, funding travel grants for those diagnosed with the disease, and promoting the track among the community.
In 2014, the Triple Negative Breast Cancer Foundation became a new supporter of the Conquer Cancer Foundation of ASCO’s Young Investigator Award (YIA) program. The Triple Negative Breast Cancer Foundation provided research grant funding for YIA recipient Karen Cadoo, MD, of Memorial Sloan Kettering Cancer Center.
Dr. Cadoo’s project seeks better treatment for advanced-stage HER2-positive and triple-negative breast cancers. Hsp90 is found in both normal and cancer cells, but it is more active in cancer cells. Based on results from previous studies, Dr. Cadoo will test the combination of an Hsp90 inhibitor with anti-HER2 therapy and chemotherapy to determine the effect of the triplet combination and the associated side effects in patients with HER2-positive breast cancer. For patients with advanced triple-negative breast cancer, she is testing the combination of an Hsp90 inhibitor and chemotherapy. She hopes that her project will help to inform further drug development in triple-negative breast cancer and help to understand why some tumors respond well to therapy, whereas others do not.
“We’re very proud of our research investments,” Ms. Dinerman said. “We’re not a large organization, but we have been able to leverage our support for large-scale projects. We have tremendous respect for ASCO and for the Conquer Cancer Foundation’s grants review process. We also love the idea of providing start-up funding and protected research time to a talented researcher at the start of her career.”
Raising Awareness for a Devastating Disease
The foundation’s many achievements in its brief history include the unique ways it helped raise the profile of triple-negative breast cancer. For example, the foundation worked to establish March 3 as Triple-Negative Breast Cancer Day and was invited to ring the bell of the New York Stock Exchange in 2014.
“Triple-Negative Breast Cancer Day was the brainchild of Lori Redmer, the foundation’s former Executive Director, who lost her life to triple-negative breast cancer,” Ms. Dinerman said.
Ms. Dinerman plans to expand upon and perfect the foundation’s current programming. A member of the Metastatic Breast Cancer Alliance, the foundation seeks to further focus on metastatic triple-negative breast cancer disease.
When asked about opportunities for ASCO members to get involved with the foundation, Ms. Dinerman said, “We are always looking for speakers for our various education programs. Our audience is hungry for information and interactions with people in the know about triple-negative breast cancer. We would welcome with open arms any ASCO members who are interested in helping us fulfill our mission.
“I want ASCO members to know how grateful we are to have been so readily accepted into the breast cancer advocacy world,” Ms. Dinerman said. “We are grateful for the advancements that we have seen since we were founded in 2006. It’s a completely different landscape now, and that wouldn’t be the case if it weren’t for ASCO members who are working to understand triple-negative breast cancer and to find targeted treatments for this disease.”
For further information about the Triple Negative Breast Cancer Foundation, please visit tnbcfoundation.org. Visit ConquerCancerFoundation.org to learn more about the Conquer Cancer Foundation. ■
© 2015. American Society of Clinical Oncology. All rights reserved.