OvCa Survivors and Thrivers Make Remarkable Strides in Research (Sept 2021 Newsletter)

September 14 2021

The month of September is dedicated to raising awareness, garnering support for research efforts, and highlighting prevention and early detection of gynecologic cancers. In addition to being Gynecologic Cancer Awareness Month, September is also considered Ovarian Cancer Awareness Month.

Like many members of the NRG Oncology Patient Advocate Committee representing various disease sites, our ovarian cancer (OvCa) survivors and thrivers are adamantly dedicated to making a difference and being a voice in the field of research so they can work alongside NRG researchers to reach a common goal: improve outcomes for those effected by cancer. In honor of Gynecologic & Ovarian Cancers Awareness Month, our newsletter calls attention to four NRG Patient Advocate members who have made recent, noteworthy accomplishments or who are in the process of achieving goals to impact the ovarian cancer community.

Diane Rose

What is a previvor? Diane Rose, a patient advocate of ovarian research, discovered she was a previvor, the term coined by FORCE, and contributes to people in her situation that sought genetic counseling and screening to determine their risk of having ovarian, breast, and pancreatic cancer and took necessary actions to prevent the diagnosis. Diane learned of her susceptibility to cancer following her aunt’s ovarian cancer diagnosis in 1999 and she learned the BRCA1 mutation was passed down from her father as BRCA1 mutation can also be carried by men and lead to increased risk of prostate and pancreatic cancers. She received information on ovarian cancer prevention and the BRCA1 mutation through the organization FORCE (Facing Hereditary Cancer Empowered) which provides education on hereditary cancers and a community that champions and advocates for access to care and better treatments for all.

Today, Diane is the Vice President of Volunteer Program at FORCE and a FRAT Advocate (FORCE Research Advocate Training Program). Despite the challenges faced on a global scale in 2020 due to the COVID-19 pandemic, FORCE provided over $1.8 million towards programs, fundraising, and administrative efforts geared towards informing the public of available clinical trials and hereditary cancer detection and prevention studies. In 2020 alone, the organization assisted in the enrollment of over 60 clinical trials and had 95 trained research advocates placed in 67 opportunities serving in a variety of roles from advising on studies to providing input on design and conduct of research to meet the community’s needs. FORCE also has a strong focus on diversity, equity, and inclusion among their educational and outreach endeavors. More about FORCE’s efforts can be found on their website.

Kathleen Gavin

Kathleen Gavin is the Executive Director of the Minnesota Ovarian Cancer Alliance (MOCA), a founding member of the Institute for Sustainable Communities, a co-chair of the Mayo Clinic Ovarian cancer SPORE Patient Advocate Committee, a patient advocate on the Roswell Park Ovarian Cancer SPORE, and a member of the University of Minnesota’s Masonic Cancer Center Community Advisory Board. Additionally, she serves on the NRG Oncology Patient Advocate, Ovarian Cancer, and Developmental Therapeutics Committees. Previously, Kathleen served on the Stand Up 2 Cancer Ovarian Cancer Dream Team.

Kathleen has been the executive director of MOCA since 2002. She provides strategic leadership to accomplish MOCA’s goals and objectives. Kathleen also serves as the leader of MOCA’s grant-making activities and as the senior spokesperson for the organization. MOCA is one of the top non-profit funders of ovarian cancer research in the United States. The organization serves women and families throughout the Upper Midwest through their research funding, medical education programs, support offerings and awareness efforts. In 2021, MOCA awarded $500,000 to ovarian cancer research projects, increasing their total amount of funded research to more than $9 million throughout the organization’s lifetime. Many of the resources and attention provided by MOCA in 2020 were dedicated to continuing to advance ovarian cancer research amid the COVID-19 pandemic. Throughout MOCA’s history, the organization has remained steadfast in its commitment to research for an early detection test and better treatments for ovarian cancer. More of MOCA’s efforts can be found on their website.

Mary (Dicey) Jackson Scroggins

Mary Scroggins is the first Director of Global Outreach and Engagement for the International Gynecologic Cancer Society (IGCS) leading patient advocacy efforts on behalf of the group and a former NRG Oncology Patient Advocacy Committee Co-chair. Mary is an ovarian cancer survivor and health activist with an expansive experience with gynecologic cancer awareness and a strong connection to the research community. She has made a major footprint in the fight for ovarian cancer by transforming the standard of care in gynecologic oncology and helping provide a voice for patients.

Mary consistently advocates in clinical research driven towards gynecologic oncology and focused a great deal on efforts for prevention and early detection of gynecologic cancers in women. She has been the recipient of several awards and has presented at a myriad of conferences. She is a member of the American Association for Cancer Research (AACR) Minorities in Cancer Research Council, the Leadership Committee for MD Anderson Cancer Center’s “Women’s Cancer Moon Shoots Program”, the National Cancer Institute (NCI)’s Investigational Drug Steering Committee and their Patient Advocate Steering Committee, and the National Institute of Health’s National Human Genome Research Institute. In addition to Mary’s work within the gynecologic oncology community, she is a founding partner of Pinkie Hugs, LLC, a writing and film production firm started with her daughter that specializes in social justice-focused documentaries.

In honor of her various contributions, the GOG Foundation, Inc. established a Mary ‘Dicey’ Scroggins Travel Fund offering reimbursement for up to two patient advocates to attend the NRG Oncology 2022 Semiannual February Meeting and the GOG Foundation, Inc. Meeting. The application deadline is October 15, 2021. Learn more

The Society of Gynecologic Oncology (SGO) recently published a call for bone marrow donors in lieu of Mary’s recent diagnosis of acute myelogenous leukemia. Learn more

Dorothy Erlanger

Dorothy Erlanger, the Chair of the NRG Oncology Patient Advocate Committee, has committed her life to facing obstacles head-on and inspiring others to do the same. Dorothy beat ovarian cancer at 50-years on then proceeded to make her mark in the gynecologic oncology research and advocate spectrum. She has worked as a consultant, trainer, and public speaker and is also a part of the Survivors Teaching Students program in her local community where she presents on OvCa symptoms, treatment experience, and outcomes to medical students at Virginia Commonwealth University School of Medicine.

Outside of the research setting, Dorothy made a commitment to a personal challenge: to become a triathlete. Prior to her diagnosis, After her battle with cancer, Dorothy completed an Ironman Triathlon including a 2.4-mile swim, a 112-mile bike, and a 26.2 mile marathon. She has completed World Championship Triathlons four times thus far on her mission!

Recently, Dorothy established a 20/20/20 fundraiser in an effort to raise $20,000 for work in early identification and particularly focused on screening for cancers in underserved populations with a very high incidence of the BRCA mutation. The 20/20/20 fundraiser represents participants who are over 20-plus years of survivorship that are committed to performing 20 kilometers of either swimming, biking, walking, or running over the course of the 20 weeks that occurs from date of diagnosis until end of treatment.

Learn more about Dorothy’s 20/20/20 Campaign

Read more about Dorothy and her message inspiring others to build their path to greatness

View her website

Do you have a story about your participation on an NRG trial or efforts you are making in the cancer community as an NRG Patient Advocate that you’d like to share? Send any information to nrg-broadcasts@nrgoncology.org for consideration. 

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