Stories about breast cancer that can inspire and inform

Blog  |  Newsroom

Committee Seeks to Elevate Voices, Meet Needs of People Living with MBC

With a mission to elevate the diverse voices and perspectives of the metastatic breast cancer (MBC) community, Susan G. Komen® has launched a new MBC Steering Committee. The committee is comprised solely of people living with MBC and seeks to ensure the unique needs of the MBC community are integrated across Komen’s programs and initiatives.

“Komen has a sense of urgency to address MBC, and while we’ve come a long way, we have so much more to do to ensure that no one dies from this disease. MBC is responsible for most of the nearly 44,000 deaths expected from breast cancer in the U.S. this year alone. We are committed to changing this unacceptable reality,” Natasha Mmeje, Komen’s Director of Community Education and Outreach, said.

“We want to continue to invest in more research to conquer metastatic and aggressive breast cancer and eliminate breast cancer disparities, support those living with MBC, educate and increase awareness about MBC and advocate for patient protections and access to care for everyone.”

Seven people living with MBC currently serve on the committee, which held its first meeting in June. The committee aims to:

  • Represent the broad community of those impacted by MBC, keeping Komen updated on the issues and needs most important to the MBC community.
  • Provide input to help guide Komen’s MBC-focused program strategy related to research, patient care services and public policy advocacy. 
  • Serve as spokespersons and advocates for Komen by participating in media events, fundraising and educational programs.
  • Serve as ambassadors to the MBC community by leveraging personal networks and local communities to share information about Komen programs, services and campaigns.
  • Help Komen build relationships and engage with other MBC advocates, thought leaders and organizations representing the diversity of the MBC community.

Meet the Committee Members

Dr. Maren Coffman

Dr. Maren Coffman had early-stage breast cancer that recurred five years later as MBC in 2019. Since her diagnosis, she has advised Komen on the MBC Impact Series and provided contacts in the Hispanic/Latina community. She has collaborated with Carolina Breast Friends to develop a support program for people living with MBC. She has reviewed research grants for METAvivor and the Department of Defense. She is a patient advocate on a funded research grant to improve decision-making in Black women with MBC.

She serves as a Metastatic Cancer Patient Advocate Committee Member for the Levine Cancer Institute to design effective support services for others with metastatic cancers. She has been state captain for the METAvivor Stage IV Stampede and the #LightUpMBC night for North Carolina. In 2021, she was a committee member for the American Cancer Society’s Crucial Catch Campaign for the Fort Mill High School Pink Out event, raising more than $12,000.

Dr. Coffman earned her Ph.D. in nursing and is a professor at a large university. Her faculty role allows flexibility and fulfills her need to serve others. She loves teaching, mentoring students and conducting research that improves the health of vulnerable populations, specifically the Hispanic/Latina population. Dr. Coffman finds purpose and meaning in advocating for the MBC community. Dr. Coffman has four children, a supportive husband and a goldendoodle named Cooper.

Ashley Fernandez

Ashley Fernandez was diagnosed with de novo MBC at the age of 31 in April 2018. Ashley is a fierce thriver who has been living with MBC while being a full-time mom to her daughter and wife to her husband, who is active duty in the Air Force. Ashley has been involved in Komen’s Public Policy initiatives, was a speaker for Komen’s MBC Impact Series and participated in Komen’s Moments campaign.  

She has also participated in the Ohio Metsquerade Ball and engages in outreach and speaks on behalf of several organizations, including Young Survival Coalition, #LightUpMBC and the American Association of Cancer Research. Advocacy gives her a sense of purpose and a community of other women going through the ups and downs of a MBC diagnosis. She is always looking for opportunities to educate and empower others to advocate for the best possible health care. 

Idalia Guzmán

Idalia Guzmán was diagnosed with MBC in 2018. Since her diagnosis, she has provided feedback for Komen’s MBC Impact Series focused on the Hispanic/Latina community, participated in Komen’s Race for the Cure in Puerto Rico and participated in two focus group sessions regarding her perspective about topics related to breast cancer research and patient involvement with Komen’s Data Science team. She has also participated in the Endpoint Outcomes Qualitative Interview study with HER2+ MBC patients and caregivers and provided feedback for the translation of the MBC project “Count Me In” in Spanish.

She is the Peer-to-Peer Support Group facilitator for Metavivor in Puerto Rico and she is registered as a volunteer for the Sociedad Americana Contra el Cancer de Puerto Rico. She realized that living with MBC was possible and she could continue to have a productive life while enduring the treatment’s side effects. She is fortunate enough that she was able to continue with her doctorate degree studies, working full-time while raising two teenagers. Sharing her experience and knowledge with other patients gives her a sense of purpose.

Julia Hughes

Julia Hughes has been living with MBC for seven years, with vast personal involvement in breast cancer topics, skilled in communication, organization and community support. She wants to help Komen address the needs of the MBC community while ensuring diverse voices and perspectives of the MBC community are included. She has been on a roller-coaster journey since her original diagnosis in February 2015. After five chemotherapy treatments, hair loss, bone biopsy and scans, she was diagnosed with MBC in June 2015. She was told she had six months to live. Now, seven years later, she’s had more than 50+ IV chemotherapy treatments, brain surgery, double hip surgery and oral medication. 

She has led a top fundraising team for Komen Hawaii since 2015, spoken at the 2019 8th Annual Susan G. Komen Pink Tie Ball, and was the More Than Pink Inspirational Award Winner in Hawaii. She also appeared in Generations Magazine, in 2019, promoting awareness of breast cancer in all age groups.

Nancy Herard-Marshall

Nancy Herard-Marshall was diagnosed with MBC in 2020. In the short time since her diagnosis, she has developed relationships with Komen, LBBC, Touch the Black Breast Cancer Alliance and Share MBC groups. She has made personal and lasting connections with individuals in these groups as well as participated in panels and a fashion show for breast cancer awareness. She is dedicated to addressing the patient perspective of Black women with MBC and the disparities they face. She has also advocated for the importance of palliative care and complementary and integrative therapies for MBC patients. She continues to learn more about her MBC community and looks forward to merging her work as a patient advocate, licensed creative arts psychotherapist and spiritual life coach to help facilitate healing within the community. 

Pam Kohl

Pam Kohl was diagnosed with stage 1 ER+ breast cancer in 2009. In October 2016, she was diagnosed with breast cancer again and on Jan. 31, 2017, she was diagnosed with MBC. A North Carolina native, Pam has more than 40 years of experience working in government and non-profit management. She served as Executive Director of Komen North Carolina Triangle to the Coast for eight years. In that role, Pam was a passionate spokesperson and advocate for equitable breast cancer support services in eastern N.C. and the vital need for breast cancer research. She helped raise millions of dollars in support of those efforts. Pam recently retired from her role with Komen as Development Director of the newly created Metastatic Breast Cancer Collaborative Research Initiative.  

Missy Van Lokeren

Missy Van Lokeren was diagnosed with invasive lobular breast cancer in June 2014. Since her recurrence with MBC in late 2018, she has dedicated her time to patient advocacy. She is very proud of her work with Komen. She represented Komen on Capitol Hill and spoke to Congress members about MBC patient issues. She also interviewed two renowned doctors at the National MBC Conference.

She has most recently served as a patient advocate reviewer for six grants on redefining MBC and is a patient advocate on two grants awarded through the Komen MBC Collaborative Research Initiative. She has been involved in fundraising for MBC for the past three years, raising more than $150,000 for Komen. She chose to not let MBC define who she is and now helps researchers with projects that will improve the patient experience and outcome. She believes there may be a cure for MBC and wants to help make it a reality.