Landmark Tool Developed For Diagnosing Inflammatory Breast Cancer

CONTACT: Amanda DeBard
Susan G. Komen

Collaboration led by Susan G. Komen, The Inflammatory Breast Cancer Foundation and the Milburn Foundation Advances Understanding of Disease Aimed to Improve Treatments, Avoid Delays in Treatment and Misdiagnoses for Patients

DALLAS – February 15, 2022 – A first-of-its-kind tool may be able to help doctors better diagnose inflammatory breast cancer (IBC). The novel tool and the findings of the analysis have been recently published in Breast Cancer Research and Treatment.

The tool was developed through a collaborative effort between Susan G. Komen, the Inflammatory Breast Cancer Research Foundation and the Milburn Foundation, which brought together a team of leading breast cancer experts including clinicians, researchers and IBC patients.

“IBC has historically been difficult to diagnose and no changes to diagnostic approach have been made since the 1960’s. It is a rare and aggressive type of breast cancer that develops rapidly and can easily be confused with a breast infection and often goes underdiagnosed or misdiagnosed,” said Dr. Reshma Jagsi, lead author, Komen Scholar and radiation oncologist.

Before the development of this tool, IBC lacked a formal, objective medical definition and diagnosis was often delayed, misdiagnosed or missed. IBC usually presents as swelling or redness of the breast, and not a lump, so it can be missed on a mammogram.

As the team began their work, it became evident that without a clear definition of IBC that included all the characteristics of this complicated disease, accelerating research would continue to be a significant challenge.

“If you want to study a disease, you have to ask, ‘What causes the disease and is this treatment better than that treatment. It’s harder to answer those questions if you haven’t clearly defined the disease,” said Dr. Kathy Miller, senior author, Komen Scholar and medical oncologist. “It sounds so simple, but having a diagnosis really is the first step toward tackling the problem.”

The group identified “defining characteristics” – including clinical, pathologic and imaging features – of IBC that led them to develop a quantitative scoring system for diagnosis. The system, or tool, is intended to increase diagnostic accuracy, predict outcomes, guide treatment decisions and inclusion criteria for clinical trials.

This tool will also enable researchers to study the biology of IBC and make discoveries to advance progress towards personalized care for all breast cancer patients.

“Komen has been able to see further into the future about how this definition isn’t just about writing something in a dictionary. This is about something that is essential to undergird future research,” added Jagsi.

IBC is aggressive and can spread quickly, resulting in approximately 30 percent of patients being diagnosed at stage IV, or with metastatic disease, meaning their breast cancer has already spread to other parts of their body.

Susan G. Komen, the Inflammatory Breast Cancer Research Foundation and Milburn Foundation raised more than $1.4 million in a fundraising campaign last year to support the IBC cohort and the research that was recently published.

“With aggressive breast cancers like IBC, patients need more treatment options, and they need them now. This collaboration is helping us get closer to finding more effective treatments for a type of breast cancer that is difficult to diagnose and treat,” said Victoria Wolodzko, Senior Vice President of Mission at Susan G. Komen.

“This partnership illustrates our continued leadership in funding critical IBC research,” said Bryon Davis, CEO of the Milburn Foundation. “The impressive results of our campaign have helped us reach this key milestone. Working with Susan G. Komen and the Inflammatory Breast Cancer Research Foundation, we brought together an exceptional team to help define a path forward in the fight against IBC.”

“Patient advocacy is about taking an active role in defining the critical conversations that will accelerate research discoveries and drive results for patients,” said Ginny Mason, Executive Director of the Inflammatory Breast Cancer Foundation. “In our more than 20 years of work in IBC patient advocacy and research, this partnership with Susan G. Komen and Milburn is critical to push key issues forward.”

Susan G. Komen, the Inflammatory Breast Cancer Research Foundation and Milburn Foundation continue to raise funds to support ongoing research studies to validate the new scoring system.

The next step is to perform further studies to validate the scoring system.

Co-authors along with Dr. Jagsi and Dr. Miller include: G. Mason, B.A. Overmoyer, W.A. Woodward, S. Badve, R.J. Schneider, J.E. Lang, M. Alpaugh, K.P. Williams, D. Vaught, A. Smith and K. Smith.

About Susan G. Komen®
Susan G. Komen® is the world’s leading nonprofit breast cancer organization, working to save lives and end breast cancer forever. Komen has an unmatched, comprehensive 360-degree approach to fighting this disease across all fronts and supporting millions of people in the U.S. and in countries worldwide.  We advocate for patients, drive research breakthroughs, improve access to high-quality care, offer direct patient support and empower people with trustworthy information. Founded by Nancy G. Brinker, who promised her sister, Susan G. Komen, that she would end the disease that claimed Suzy’s life, Komen remains committed to supporting those affected by breast cancer today, while tirelessly searching for tomorrow’s cures. Visit or call 1-877 GO KOMEN. Connect with us on social at

About Inflammatory Breast Cancer Research Foundation
Since 1999 the Inflammatory Breast Cancer Research Foundation (IBCRF) has been leading the way in improving the lives of those touched by inflammatory breast cancer (IBC) through the power of action and advocacy. This is accomplished by tenaciously fostering innovative research, creatively educating stakeholders, and tirelessly advocating for both current patients and IBC survivors.

As a web-based non-profit, IBCRF relies on its dedicated volunteers across the country. Guided by the Medical Advisory Board, a group of extraordinary oncology professionals, IBCRF has funded patient-focused IBC research resulting in new discoveries as well as clinical trials. Learn more at or call 1-877-stop ibc. On social media? Join us on Facebook and Twitter (@IBCResearch).

About Milburn Foundation®
The Milburn Foundation is a private foundation that structures creative strategic partnerships with both public charities and for-profit companies to drive philanthropic innovation for breast cancer research and more. The Milburn Foundation was born out of a father’s love for his daughter when she was diagnosed with Triple Negative Inflammatory Breast Cancer. Milburn is the proud recipient of the 2016 Susan G. Komen Reach Award (for fundraising innovation). Organizations interested in inventive Corporate Social Responsibility (CSR), Venture Philanthropy, Impact Investing or Activist Philanthropy initiatives should contact us to learn more about how our donations can be coupled with a strategic partners’ objectives to amplify impact. Find out more or contact us by visiting

Inflammatory Breast Cancer (IBC) Research Foundation, Susan G. Komen®, and Milburn Foundation Raise More Than $635,000 in 31 Days to Take On Aggressive Breast Cancer

Inflammatory Breast Cancer (IBC) Research Foundation, Susan G. Komen ®, and the Milburn Foundation have again shown their partnership to be an impactful and powerful force against inflammatory breast cancer (IBC) — an aggressive subtype of breast cancer that is challenging to diagnose and treat. Together, in just 31 days, the organizations raised more than $635,000 for research aimed at finding innovative new approaches to diagnosing and treating IBC as well as other breast cancer efforts.

During the month of March, IBC Research Foundation and Milburn matched all donations to Komen up to a predetermined amount with a goal to raise $250,000 in funds specifically for research into IBC. This form of breast cancer is particularly dangerous because it can be missed on mammogram, doesn’t usually present with a lump, is often misdiagnosed, and spreads quickly. About 30 percent of those diagnosed with IBC will learn that their cancer has already spread, or metastasized, to other parts of the body.

“Patient advocacy is about taking an active role in defining the critical conversations that will drive accelerated results,” said Ginny Mason, Executive Director of the IBC Research Foundation. “In our 19 years of work in IBC patient advocacy, this partnership with Susan G Komen and Milburn is special given the way the team works together so creatively to push key conversations forward. This year’s campaign success will result in benefits for the IBC community and more, as critical research innovation is realized.”

“While we’ve made significant progress against breast cancer, more than 41,000 lives are lost each year in the U.S. to metastatic breast cancer, and that’s unacceptable,” said Paula Schneider, President and CEO at Susan G. Komen. “We’ll reduce that number and save lives when we figure out how to stop aggressive breast cancers like IBC. Through this successful partnership with Milburn and IBC Research Foundation, we are making an even greater impact together than we ever could alone.”

The organizations are also setting milestones for the next three years of continued partnership as they work to identify the most critical questions in IBC and IBC research, and continue to seek out and fund innovative IBC research.

“This partnership illustrates our continued leadership in funding critical IBC research,” said Bryon Davis, President of the Milburn Foundation. “The impressive results of this campaign will help us reach key milestones in support of this initiative. Together, we are curating exceptional teams, defining a path forward and ensuring adequate financial support that will have bold and positive implications in the fight against IBC and support Susan G. Komen’s Bold Goal.”

The partnership between the three organizations has now raised more than $1.59 million to date, thanks to two earlier matching gift campaigns in 2016 and 2017. Funds raised have made it possible to invest in breakthrough research, including studies in IBC, aggressive and metastatic breast cancers.

IBC Collaboration Leads to $550,000 for IBC, Breast Cancer and More

Inflammatory Breast Cancer Research Foundation, Milburn Foundation and Susan G. Komen ®, are excited to share that nearly $550,000 has been raised to fund research into inflammatory breast cancer (IBC) as well as other critical breast cancer research and community health programs. As you know, IBC is a less common but very aggressive form of breast cancer.

Throughout the month of March, Milburn and the Inflammatory Breast Cancer Research Foundation teamed up to match all donations made to Komen up to a predetermined goal of $50,000—a campaign which ultimately raised more than half a million dollars, and exceeded the goal ten-fold. In total, nearly $550,000 was raised through the campaign which will support, in part, research aimed at finding new ways of detecting and treating IBC. IBC awareness was also accomplished with IBC-centric materials, associated with the campaign, going out to over 920,000 individuals in Komen’s network.

This marks the second time the three organizations have partnered to advance IBC research as a team. Last fall, the partners announced two funding opportunities for investigators with novel ideas about diagnosis and treatment of IBC. This project alone drove more awareness of IBC within the research community and garnered significantly more submissions than were originally anticipated. We’re now ready to announce the recipients of these awards.

Congratulations to:
John Martens, Ph.D., from Erasmus Universitair Medisch Centrum Rotterdam, who received funding to combine patient information from an established Dutch IBC registry with the latest genomic technology to improve the diagnosis, monitoring, and treatment of IBC.

Mihaela Skobe, Ph.D., from the Icahn School of Medicine at Mount Sinai also received funding to understand how the interactions between Triple Negative IBC and the lymphatic system influence the aggressiveness of the disease, ultimately providing insight on potential new treatment strategies.

“Research progress in a disease like IBC, requires vision, creative thinking and action. Through the collaborative IBC research grants and the recent matching gift campaign we’re developing a new model for meeting the needs of those facing an IBC diagnosis,” said Ginny Mason, RN, BSN, Executive Director of the IBC Research Foundation.

“The success of this partnership proves that strategic partnerships spanning across multiple charities can yield powerful results for specialized research,” said Bryon Davis, President of the Milburn Foundation. “This partnership was actively designed and facilitated for results, requiring all parties to look at challenges in new ways and leveraging each organization’s strengths.”

“Our partnership has already allowed us to fund important research, and will go a long way toward helping to reduce deaths from breast cancer,” said Ellen Willmott, interim President and CEO for Susan G. Komen. “Komen has set a Bold Goal, but we know we will not be able to achieve this alone — only as a community, which is why our partnership with the Milburn Foundation and the Inflammatory Breast Cancer Research Foundation is so valuable.”

A portion of the funds from the March campaign will be used to provide additional research support to the most promising of the two recipients named above, following a review of their progress to date and other prerequisites.

Inflammatory Breast Cancer Research Foundation, Milburn Foundation and Susan G. Komen® Push for Breakthroughs in IBC Research

West Lafayette — October 18, 2016
Inflammatory Breast Cancer Research Foundation and two prestigious foundations today announced a collaboration aimed at finding new approaches to diagnosing and treating inflammatory breast cancer (IBC). Inflammatory Breast Cancer Research Foundation, the Milburn Foundation and Susan G. Komen are seeking applications that will explore new ideas and novel approaches to combating IBC— a less common but particularly aggressive form of breast cancer that is difficult to diagnose and treat.

IBC is often difficult to diagnose because it frequently does not present as a lump. Instead, women notice symptoms such as redness and swelling or enlargement of the breast that are often mistaken as an infection, delaying diagnosis. By the time IBC is diagnosed, it is at an advanced stage (i.e., stage III or stage IV).

“It’s been a challenge to bring adequate research attention to inflammatory breast cancer,” said Ginny Mason RN, IBC Survivor and Executive Director of Inflammatory Breast Cancer Research Foundation. “Collaboration is essential for patient-focused success in both the research and nonprofit communities. We’re excited to be a part of this multi-organization initiative that provides a platform for creative collaborations and encourages submissions across disciplines.”

President and Chief Investment Officer of the Milburn Foundation Bryon Davis shared his thoughts on the genesis of collaboration among the three organizations.

“The Milburn Foundation is very pleased to have provided a valuable voice in structuring this multiparty collaboration,” Davis said. “By providing funding support and fostering relationships we helped to facilitate a new alliance that will support research innovation. We are exceptionally proud of what this initiative represents and are honored to partner with two organizations that demonstrate such a sincere commitment to the breast cancer cause.”

“Additional IBC research is needed to improve diagnosis of this unique subtype of breast cancer and understand how biology drives its progression, thereby leading to improved prognosis and more-effective treatment for those with IBC,” said Komen President and CEO Dr. Judy Salerno.