MBC Advocacy: Finding Purpose in Adversity
A diagnosis of Stage IV Metastatic Breast Cancer is typically the (or one of the) most significant traumas a person and their loved ones will experience. Rather than an immediate death sentence, strides in cancer medication and research means that many will live for years after receiving this terminal diagnosis. Thus, patients and their families may begin to wonder, "What do I/we do with the time afforded to me?" and “How can I/we help others living with MBC now and in the future?” One answer to these vitally important questions is to dedicate time and energy to advocacy. This episode includes patient advocates, Dr. Amy Beumer, Janice Cowden, RN, Stephanie Walker, RN, Rod Ritchie, Dr. Rosemary Carrera, and Miranda Gonzales, sharing how they have found purpose in the midst of adversity as well as representatives from Living Beyond Breast Cancer (LBBC), Cathy Ormerod, and METAvivor, Dan Cramer and Tami Bowling, sharing about ongoing advocacy opportunities. What will YOU do with the time you have on this earth? Listen for ideas and a very specific call to action at the end of the episode from the guest producers, Abigail Johnston, Esquire, Director of Mentorship with Project Life, and Lesley Glenn, Founder and CEO of Project Life, a virtual wellness house for those living with MBC, their loved ones and allies.
Additional Resources:
· CanCare
· Guiding Researchers and Advocates to Scientific Partnerships (GRASP)
Contact Info for Panelists:
· Abigail Johnston, Esquire, StageIVAdvocacyAMJ@gmail.com & mentorship@projectlifembc.com
· Stephanie Walker, StephanieWalker1303@gmail.com
· Janice Cowden, JaniceC8957@aol.com
· Rod Ritchie, RodneyRitchie@gmail.com
· Amy Beumer, beumerae@gmail.com
· Rosemary Carrera, Rosemary@305PinkPack.org
· Lesley Glenn, Lesley@projectlifembc.com
· Miranda Gonzales, MirandaLDGonzales@gmail.com.
· Cathy Ormerod, LBBC, cormerod@lbbc.org
· Tami Bowling, lightupmbc.campaigndirector@gmail.com
· Dan Cramer, Dan@metavivor.org
Advocacy Training Programs
· Advocacy Bootcamp with Project Life
· Hear My Voice with Living Beyond Breast Cancer
· American Cancer Society Advocacy Program
· Project LEAD with the National Breast Cancer Coalition (NBCC)
· Respected Influencers Through Science and Education (RISE) with the Young Survivors Coalition (YSC)
· FORCE (Facing Our Risk of Cancer Empowered)
· Progress for Patients Training with Friends of Cancer Research
· CanCare
· Latina’s Contra Cancer - Defensoras
· Cancer Policy and Advocacy Team (CPAT) with the National Coalition for Cancer Survivorship (NCCS)
· Alamo Breast Cancer Foundation Advocate Program for San Antonio Breast Cancer Symposium (SABCS)
· Scientist Survivor Program with American Association for Clinical Research (AACR)
Suggestion for Further Reading:
Meet the Guests of the Episode
Abigail Johnston
Abigail is a recovering lawyer living in Orlando, Florida with her husband, two boys and a very spoiled cat. She has been living with Stage IV Metastatic Breast Cancer since 2017 and has found a tremendous sense of purpose through advocacy. Abigail serves as the Director of Mentorship for Project Life, as the Chair of the MBC Leadership Committee for Surviving Breast Cancer, as a research advocate with FORCE, as a RISE Legacy advocate for Young Survival Coalition, moderates an MBC support group with the 305PinkPack and a volunteer with a variety of organizations focused on serving the breast cancer and the MBC community. You can find her musings online at No Half Measures and on quite a few social media platforms.
You can contact her at:
StageIVAdvocacyAMJ@gmail.com &
IG: @amj1315
FB: Abigail Schroeder Johnston
Twitter: @amjohnston1315
LinkedIn: Abigail Johnston
Lesley Glenn
Passion, motivation and personal experience of living with Metastatic Breast Cancer for the past 10.5 years is what drives Lesley’s desire to be an advocate. Her goal is to partner with communities, researchers and organizations to aid with the funding of research, raising awareness, and providing support to the overlooked community of those who also live with Metastatic Breast Cancer. With a bachelors of Science in Organizational Leadership, she has been actively involved in advocacy since 2015, training with the inaugural Hear My Voice Volunteer class presented by Living Beyond Breast Cancer. She was invited back as a mentor in 2018 and was awarded the Living Beyond Breast Cancer Leadership Volunteer Award in the Fall of the same year. She enjoys working with researchers and other stakeholders in the MBC field. She is a member of the Metastatic Breast Cancer Alliance, Susan G. Komen’s Advocates in Science, the scientific advisory committee for the Love Research Army, and a consumer reviewer with the DOD-CDMRP, PICORI and Komen. She recently launched her biggest endeavor, Project Life, a virtual wellness house for those living with MBC and their loved ones. Lesley currently lives in the Rogue Valley of Southern Oregon with her rescue pup and 2 rescue cats.
You can contact her at:
IG & Twitter: @projectlifembc
Catherine Ormerod , MSS, MSLP, Executive Vice President of Strategy & Mission for Living Beyond Breast Cancer
Education. Advocacy. Collaboration. Support. These four words summarize Cathy’s background and expertise. She employs each to fuel the LBBC staff and board to create programs that provide practical information, comfort, and insight into how to make sense of a disease that profoundly alters people’s lives and sense of self. She raises dollars, helps develop new programs, and brokers partnerships with people and organizations that expand LBBC’s expertise. Primarily, she promotes LBBC’s services to anyone who will listen.
LBBC’s Leadership Volunteers carry the organization’s mission into their communities, whether online or in-person, these volunteers are found in communities across the country advocating for better — for better treatments, wider diversity in clinical trials, more leadership opportunities in health organizations, health equity, access to treatments, fiscal sanity when it comes to cancer costs, and for mental health services.
Prior to joining LBBC, Cathy served as the director of national programs of VISION 2020, a national program of the Institute for Women’s Health and Leadership at Drexel University’s College of Medicine. She was also the founding director of the Nonprofit Executive Leadership Institute at Bryn Mawr College Graduate School of Social Work and Social Research, which provides executive education to build skills of nonprofit leaders while providing them with a network of their peers.
You can contact her at:
IG & Twitter: @LivingBeyondBC
FB & LinkedIn: LivingBeyondBreastCancer
IG: @clormerod
FB & Twitter: cormerod
LinkedIn: CatherineOmermod
Dan Cramer
Dan (he/him/his) is the Co-founder of Grassroots Solutions, a consulting firm that advises campaigns, advocacy organizations and foundations on purposeful engagement and advocacy for the public good. Prior to his time as a coach and consultant, Dan managed political campaigns, served on the staff of both state and federal elected officials and earned a J.D. from Georgetown University Law Center. Dan and his wife Cassie are also cancer bloggers chronicling their efforts to navigate life as a couple after her Metastatic Breast Cancer diagnosis. You can see their reflections at Meaning and Stuff. Dan also serves on the board of METAvivor and chairs the organization’s Advocacy Committee
You can contact him at:
IG: @dancramer402
LinkedIn: DanielCramer
Tami Eagle Bowling
Tami is the Founder and Creator of The Eagle Method, a framework for learning to effectively build resilience and embrace uncertainty, so that people can thrive at home and at work. With no family history at the age of 41, she was diagnosed with metastatic breast cancer (MBC), otherwise known as Stage IV breast cancer, which is considered terminal. She had to adapt to this unexpected bombshell in her life when her children were just 2 and 4 years old.
Tami generously donates her time to volunteer for organizations that raise funds for MBC research and mentors the newly diagnosed. She is the Global Campaign Director of #LightUpMBC, an annual campaign that shines a light on the disease. Tami is passionate about inspiring others and enjoys sharing her insights on embracing uncertainty. Her message of resilience and passion for life resonates loud and clear to all who hear her speak.
You can contact her at:
lightupmbc.campaigndirector@gmail.com
FB, IG & Twitter: @LightUpMBC
IG: @EagleMethod
FB: @TamiEagleBowling
Dr. Amy Beumer
Amy was diagnosed with stage I breast cancer in 2017 and metastatic in 2020. In her previous life she was a biology professor teaching various microbiology and introductory biology courses as well as conducting research in drinking water microbiology and team learning. Currently, she is upping her knowledge of cancer research, advocating, and getting as much traveling, hiking, reading, gardening and time with friends and family in as possible. Her current advocacy focuses on peer support and mentoring as well as research advocacy.
You can contact her at:
IG: @amybeumer
Janice Cowden, RN
Janice is a metastatic breast cancer patient and a strong advocate and proponent for increased knowledge about disease, treatments, and clinical trials for patients. Originally diagnosed in 2011 with triple negative, her cancer metastasized in 2016. Janice's background as a pediatric nurse drove her to learn more about the science behind her disease and available treatment options.
Janice is a graduate of the Living Beyond Breast Cancer (LBBC) Hear my Voice program as well as a graduate of the National Breast Cancer Coalition’s (NBCC) Project LEAD program. Janice served as a mentor at the inaugural launch of the GRASPCancer project (Guiding Researchers And Advocates To Scientific Relationships). And she served as a Grad Alumni mentor for the 2018 LBBC Hear My Voice participants. She is also a trained LBBC volunteer for their Peer-Matched Helpline, and a Peer Support Leader for METAvivor Research and Support, Inc.
In her spare time, Janice enjoys traveling, reading fiction, swimming, spending time with family and friends. She and her husband of 41 years have two adult children and three grandchildren, ages 3, 4, and 5.
You can contact her at:
IG & Twitter: @janiceTNBCmets
FB: Janice Cowden
LinkedIn: Janice Cowden
Stephanie Walker, RN
Stephanie is registered nurse with close to 40 years of clinical practice and secondary teaching experience. She has spent time in pediatric and adult critical care, working in such areas as Level 1 trauma centers and critical access hospitals. Stephanie’s last 15 years of nursing focused on end of life/hospice care. In 2015, she received a de novo metastatic breast cancer diagnosis, and 3 years later she began her path into MBC advocacy. She has pushed for rural equality and equity in breast cancer. She is a member of the MBC Alliance, Project lead on the BECOME initiative (Black Experience of Clinical Trial and Opportunities for Meaningful Engagement), an LBBC Helpline/HMV volunteer and a Susan G Komen volunteer.
Stephanie is married and lives in Tarboro, NC with her husband John and their rescue dog Rex, advocating for men and women in rural areas as her own, for equal access to quality healthcare, treatment modalities, and resources.
You can contact her at:
IG: @stepnyrn
Twitter: @faceofstage4
LinkedIn: Stephanie Walker
Dr. Rosemary Carrera
Rosemary is founder of 305 Pink Pack, a Miami-based non-profit that provides vital direct and support services for local women in cancer treatment. She was diagnosed with breast cancer at the age of 40, and was blessed to have her family and loved ones support her, her husband, Oscar, and their daughter, Alessi, who was only 8 months old at the time. Seeing women with limited resources struggle through treatment, prompted Rosemary to create 305 Pink Pack which ensures that local women can access their treatment, and recover from it, by offering transportation, child-care, support services and more.
You can contact her at:
@305pinkpack on All Platforms
Miranda Gonzales
Miranda was a stay-at-home mom to her family of 7 when she received her Stage III diagnosis in 2016. As a young Latina, she often felt out of place among the other cancer patients. Needing to connect with others like her put her on a path to learning to provide that very support to others that she had always wanted. Miranda began to shift her volunteerism from school activities to the breast cancer community. She participates in all facets of advocacy - she is a CanCare peer support volunteer, a YSC RISE Advocate, a Young Advocate with Living Beyond Breast Cancer, and an Ambassador with For The Breast of Us, to name a few. Miranda then began to see the division between “early-stagers” and the MBC community. Bridging this gap and providing education on MBC to other early-stagers has become a big focus of her advocacy. Miranda currently works for SHARE Cancer Support, behind the scenes for the Our MBC Life podcast from her home in Houston, Texas. She is truly honored to be able to work alongside some amazingly talented and resilient women.
You can contact her at:
IG: @MirLorDehGon
Rod Ritchie
Rod is a Sydney-born writer, internet publisher, and breast cancer patient activist, diagnosed in March 2014 with Stage IIIB IBC. Two years later he was diagnosed with prostate cancer. Currently he’s NED for both cancers.
A regular poster on Twitter @malefitness, he contributes to various closed breast and prostate cancer Facebook pages, writes articles and creates videos. His website, Male Breast Cancer, includes links to the latest research.
Project LEAD Graduate 2018
Patient Advocate scholarship to San Antonio Breast Cancer Symposium, 2019
President, Male Breast Cancer Global Alliance
You can contact him at:
Twitter: @malefitness
