Mentor: Melinda Bachini
Melinda Bachini is a 12-year survivor of cholangiocarcinoma. In 2012 she was treated at the National Cancer Institute by Dr. Rosenberg with a clinical trial using Adoptive Cell Therapy with TIL. Due to her exceptional and breakthrough response to NIH treatment, her story was published in the New York Times and other media.
Melinda is married and the mother of six children, grandmother to one. She is passionate about patient advocacy. Her personal experience with previous and current treatments allows for great insight into patients participating in clinical trials. Her position as Director of Advocacy for the Cholangiocarcinoma Foundation allows Melinda to interact, support and educates others touched by this cancer. She shares her story with as many cancer patients as possible in hopes of giving courage to those in need.
Melinda had previously volunteered for seven years with the Cholangiocarcinoma Foundation and in August of 2017 came on as staff. She also worked for over 15 years in the Emergency Medical Field as an EMT Paramedic.
Melinda serves as a patient advocate for the NCI Hepatobiliary Task Force, the NCI Patient Advocate Steering Committee (PASC), ECOG-ACRIN GI Committee, ECOG-ACRIN Cancer Research Advocacy Committee, NCI Council of Research Advocates, and the NCCN Hepatobiliary Guideline Panel. Melinda attended 2016, 2017, and 2018 NCCS, CPAT Symposium, and advocated on Capitol Hill. She participated as a panelist in the Cancer Moonshot – Community Oncology Event at the White House, told her personal story, and was introduced by her state Senator for the Innovation and Access in Quality Cancer Care at the US Capitol. In June of 2017 she spoke with nine US Senators at NIH to share her personal story of how research has prolonged her life. Melinda has served as a Consumer Reviewer for the Department of Defense for several years.
Twitter: @melinda_bachini
Mentor: Carole Baas, Ph.D.
Carole Baas became a cancer advocate following her diagnosis with breast cancer in 2004 after the birth of her second child. Carole has a Ph.D. in Biomedical Engineering from Texas A&M University – she worked with cross-disciplinary teams at 12 different Centers across the U.S. to develop a comprehensive advocacy program. Currently, in the second phase of the NCI program, she is an advocate with the Houston Methodist Research Institute Physical Sciences in Oncology (PS-ON) Center, an innovative effort to encourage collaboration between physical scientists/engineers and cancer biologists/oncologists to generate novel methods to improve the diagnosis and treatment of cancer. Previously Carole served as the national advocate for the National Cancer Institute’s (NCI) PS-ON program.
Carole is a graduate of the National Breast Cancer Coalition’s Project LEAD (2008) and Project LEAD Clinical Trials (2010). She regularly participates as an advocate reviewer for the DoD Congressionally Directed Medical Research Program, PCORI, and Komen as part of their Advocate in Science program. Carole is also a Young Survival Coalition (YSC) RISE Legacy Advocate, a member of the External Advisory Board for the Simmons Comprehensive Cancer Center at UT Southwestern, and a member of the Institutional Review Board at Baylor Research Institute in Dallas, Texas.
Twitter: @CaroleBaas
Mentor: Jacqueline Benson, P.A.
Jacqueline Benson is a Physician Assistant, military spouse and mother of four. She was diagnosed with inflammatory metastatic HER2+ breast cancer de novo (no evidence of disease prior to metastatic diagnosis) on a routine yearly mammogram in 2016. She has undergone multiple cycles of chemotherapy, radiation treatment, and participated in a clinical trial.
Since her diagnosis she has devoted her time and energy to advocate for women living with metastatic breast cancer. She is inspired by those who came before and her friends who did not survive their breast cancer. She is an SOS mentor for women with newly diagnosed metastatic breast cancer through INOVA Fairfax and a graduate of NBCC Project Lead 2022.
She plans to continue to assist in influencing public policy and to have a voice in ongoing and forthcoming research proposals.
Mentor: Amy Beumer, Ph.D.
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.Twitter: @amybeumer
Mentor: Barbara Bigelow
Barbara is a licensed psychologist and worked most of her life as a high school psychologist. Barbara has had breast cancer for 20 years, the last 7 as metastatic. A vocal advocate for patient research, she herself was in a clinical trial for immunotherapy that landed her in the hospital for 2 months. Along the way she has also survived lung cancer and melanoma. Today she is the Vice President of Metavivor, committed to raising money to fund metastatic breast cancer research. She also blogs about her experiences using humor to inspire hope for others at The Cancer Chronicles.
You may recognize her from the registration desk at the DC Stampede, the 2018 Elements Campaign with her daughter Bridget for #thisismnc, the Count Me In video for the MBC Project, live streaming from LBBC or walking the runway in New York Fashion Week 2019 (#notjustone)
Twitter: @tbigelow1953
Mentor: Martha Carlson
My cancer-related advocacy has focused on helping those with metastatic cancer of any type, but especially breast cancer, to live with better quality of life for as long as possible. I have written extensively, both in print and online, about current treatments and clinical trials, including information on how other people with cancer, their caregivers, and those who love them can further support cancer research. I’ve participated in clinical trials related to quality of life and for heart effects due to targeted treatment, but one of my biggest joys has come as a patient key stakeholder reviewing material for an National Cancer Institute-funded project. I work on my own and through the efforts of organizations to increase research funding and inform the public about the importance of cancer research. It is a thrill to be among the GRASP mentors
Twitter: @Martha__Carlson
Mentor: Deborah Collyar
Deborah Collyar has been a leader in patient engagement and advocacy since her first cancer diagnosis. She utilizes her business leadership, IT, and communication skills to bridge research gaps between scientists, medical providers, and patients. Deborah founded the Patient Advocates in Research (PAIR) international network in 1996, “where research meets reality” and consults with the health and medical research communities.
Deborah has infused hundreds of patient advocates into research programs while creating a variety of trainings and delivering innovative ways to gather input from thousands of patients. Her work encompasses many diseases, programs and policies at grassroots, national and international levels, and emphasizes patient issues throughout early development and protocols, recruitment, retention, and results reporting. Deborah also serves as a consultant to Health Literacy Media (HLM) in their Clearly Communicating Clinical Trials (C3T) program. Deborah encourages innovation in clinical trials and healthcare delivery. She has been a key member in several pivotal projects, academic institutions, companies, and international consortia.
Twitter: @deborahcollyar
Mentor: Terri Conneran
Since 2017, Terri Conneran has been battling stage III lung cancer. Eventually, the biomarker that was causing her non-small cell adenocarcinoma was identified as a KRAS biomarker. Unable to find a support group with others on a similar journey, she founded KRAS Kickers 2019 to create a network for patients and families in search of KRAS Knowledge Research & Advocacy for Survivorship.
KRAS Kickers, members engage with leading doctors, researchers, and advocates, learn about new developments and clinical trials, connect to resources, build community, and share their stories to give hope to each other with a common goal to kick cancer’s KRAS!
Twitter: @TerriConneran @KRASKickers
Mentor: Janice Cowden, R.N.
Janice was diagnosed with Stage IV metastatic triple-negative breast cancer in 2016, a recurrence from Stage I TNBC nearly 5 years prior. An exceptional responder to her first line of treatment, Janice is extremely fortunate to have had no evidence of disease (NED) since November 2016. With a 20+ year background in Nursing, science, research and studying diseases have always been of interest. Nine months following her MBC diagnosis, Janice launched into MBC Patient Advocacy by participating in training through Living Beyond Breast Cancer’s (LBBC) Hear My Voice Advocacy Outreach program in 2017. As a Research Advocate, Janice attends multiple scientific breast cancer conferences annually to learn more about MBC research and disease. She has a strong interest in partnering with Scientists, Researchers, and Clinicians to work towards more effective treatment modalities that enable MBC patients to live longer and provide a better quality of life. In 2019, she completed NBCC’s Project LEAD. Predominantly, Janice’s advocacy interests include MBC education, awareness, & research, legislative/policy, as well as Peer-to-Peer support. She is a trained Peer Support Volunteer Leader for METAvivor Research & Support and serves as a Peer mentor for LBBC’s volunteer Helpline, as well as for ABCD. Janice is involved in several patient-led advocacy groups, including GRASP, the Patient Centered Dosing Initiative (PCDI), ACE Collaborative Group, the Love Research Army Scientific Advisory Committee, and is the founder and Administrator of The Newly Diagnosed MBC Facebook Peer Support group. She considers herself a lifelong learner and enjoys educating others. In her spare time, Janice enjoys reading, swimming, and spending time with her family, including three grandchildren.
Twitter: @JaniceTNBCmets
Mentor: Lisa Craine
Lisa Craine was diagnosed with Stage IV Intrahepactic Cholangiocarcinoma in 2010. She has had 5 recurrences with 8 tumors. Her treatments have included surgeries, chemotherapies and radiation. Lisa spends her days mentoring and advocating for other patients. She is a volunteer Patient Mentor and Research Advocate with The Cholangiocarcinoma Foundation. She is also the Founder of Craine’s Cholangiocarcinoma Crew, a 501(c)3 organization granting 100% of the funds raised to bile duct cancer research. Lisa has completed Advocacy training with The Research Advocacy Network, The Global Liver Institute, AAADV, ASCO, AACR and The Cholangiocarcinoma Foundation. Her mentoring training was completed through The Scott Hamilton Cares Initiative. She is a board member of The Voice of the Patient Advocacy Council for the Cleveland Clinic Taussig Cancer Institute, The Cleveland Clinic Digestive Disease Institute and The Mike Shane Memorial Fund. Lisa has advocated for Liver cancer on Capital Hill with The LIVER Act of 2019, H.R. 3016. Lisa is a George H.W. Bush Points of Light Award Recipient. She has also received recognition from the White House for her volunteer work in cancer advocacy. Her passion is serving others by helping them navigate second opinions, clinical trials and providing support, through hope, love, knowledge and prayers.
Twitter: @lisamariecraine
Mentor: Debbie Denardi
Debbie has been screened for breast cancer every 6 months since she was 27 years old due to her family history of breast cancer. Her mother and 3 of her sisters died after a breast cancer diagnosis in the ‘70s. They were all very young (40-45 years old). This family history was reported to every doctor she visited, but no doctor or nurse advised her to get tested for hereditary cancer. Finally, in 2010 when she was 48 years old and after 4 months of a clean mammogram and ultrasound, she was diagnosed with TNBC and a BRCA1 mutation.
Since her diagnosis and lack of education about hereditary cancers, she has been learning as much as she can to educate individuals and families about hereditary cancer. She started her volunteer work with FORCE (Facing Hereditary Cancer Empowered) and has served as a peer support leader in S. Florida since 2012. She also serves as the Treasurer for FORCE’s Board. During the first few years of her advocacy, she attended conferences and continued her local support. In 2018, she had the opportunity to start a new phase of her career and education in advocacy.
Twitter: @debsetu
Mentor: Katie Edick
Katie Edick has been living with metastatic breast cancer (MBC) since 2016. She has been a pediatric occupational therapist for 21 years.
Katie has volunteered with Little Pink Houses of Hope leading yearly retreats for families going through breast cancer. She provides mentoring to other MBC patients through Imerman Angels. Katie is engaging more with patient advocacy through sharing her story on local news programs, senate hearing committees, and podcasts to help educate and advocate for legislation and research to support families going through a breast cancer diagnosis. Currently, she is the social media coordinator for the Michigan Breast Cancer Coalition. She sits on two different workgroup committees in Michigan’s Department of Health & Human Services for young women with breast cancer; the advisory committee and the metastatic breast cancer committee. She attended the NBCC Advocate Leadership Summit and engaged with local legislators during that campaign, and has attended the annual Metastatic Breast Cancer Research Conference for three years. Check out her blog at terminallyjoyful.com.
Twitter: @KatieEdick
Mentor: Sandra (Sandy) Finestone, Psy.D.
Sandra (Sandy) Finestone, Psy.D., is a 30-year breast cancer survivor and research advocate who has been a volunteer for Susan G. Komen for over 25 years. Sandy serves on the Komen Advocates in Science (AIS) Steering Committee and chairs the AIS Training Working Group.
Dr. Finestone founded the Orange County Breast Cancer Coalition and opened the Hope Wellness Center to meet the needs of breast cancer survivors. In 2009, Dr. Finestone went to the country of Jordan to facilitate a meeting that taught healthcare providers about support groups for women with breast cancer. Later that year, she returned to the Middle East to train women in Kuwait and Egypt about support groups. She has been recognized for her work, receiving the 2002 National Komen Outstanding Volunteer of the Year for Lifetime Achievement.
Dr. Finestone reviews research grants for Komen as well as the Department of Defense, Cochrane, Avon, PCORI and the states of New York and California. She is also an Ambassador for PCORI. She has a private therapy practice with a focus on cancer patients and their families and facilitates support groups for women with cancer as well as women dealing with metastatic disease. Her young women’s group works in collaboration with the Young Survival Coalition.
Mentor: Lesley Kailani Glenn
Passion, motivation, and personal experience of living with metastatic breast cancer for the past 9 years drives Lesley’s desire to partner with communities, researchers and organizations, in aiding the funding of research for a cure, bringing awareness to this overlooked stage of breast cancer and support to those who live daily with Metastatic Breast Cancer. With a bachelor 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 is the Co-Founder of the Annual Make Good Moves, Climb for a Cure that is held annually in Southern California, and Southern Oregon which funds research for a cure. She enjoys working with researchers and other stakeholders in the metastatic breast cancer field. She is a member of the Metastatic Breast Cancer Alliance, Susan G. Komen’s Advocates in Science, on the scientific advisory committee for the Love Research Army, and a consumer reviewer with the DOD-CDMRP. She recently launched her biggest endeavor, Project Life, which is a virtual wellness house for those living with metastatic breast cancer and their loved ones. Lesley currently, lives in the Rogue Valley of Southern Oregon with her 2 rescue pups and 1 rescue cat who thinks he is one of the dogs.
Twitter: @lesleykailani
Mentor: Victoria Goldberg
Victoria Goldberg has been living with Triple Positive MBC since January 2014. The side effects of the treatment forced her to stop working in the stressful and grueling field of finance earlier than she had planned. She was not ready for retirement and felt a desire to assist others who live daily with this dreadful disease. Advocacy gave her that missing structure and purpose. It felt “right.” She came to SHARE in 2017, first as a BC helpline volunteer, and later as a founder and manager of TalkMets, SHARE’s dedicated helpline for those living with MBC, and a support group facilitator. In July 2020, Victoria joined the team behind the Our MBC Life podcast. She is one of the senior producers and is trying her hand at sound editing, graphic design, and co-hosting. Victoria enjoys working with peers and other stakeholders in the metastatic breast cancer field. She is a member of the MBC Alliance and a graduate of the 2018 NBCC’s Project LEAD. Victoria resides in New York City never forgetting that she is living with an advanced disease, but it’s no longer on the forefront of her life.
Mentor: Christine Hodgdon, M.S.
Christine Hodgdon was a conservation biologist before her metastatic breast cancer (MBC) diagnosis in April 2015. Her advocacy career began when she launched TheStormRiders.org, an educational resource for MBC patients that includes a searchable clinical trial database. She later co-founded GRASP – Guiding Researchers & Advocates to Scientific Partnerships which empowers patients, clinicians, and researchers to exchange ideas and learn from each other. She is the research working group co-lead of the MBC Alliance and spearheads the Breast Cancer Brain Metastasis (BCBM) Initiative: Marina Kaplan Project with the goal to address the unmet research needs of breast cancer patients living with central nervous system (CNS) metastasis. She was also a founding committee member of MBCBrainMets.org, a resource hub for breast cancer patients living with brain metastasis. She is the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center patient advocate representative for the Translational Breast Cancer Research Consortium (TBCRC) and she co-leads the Hopkins INSPIRE (Influencing Science through Patient-Informed Research & Education) Advocacy Program. Her advocacy work is inspired and driven by the loss of many friends to MBC.
Twitter: @christeeny513
Mentor: Samantha Horn
Sam was diagnosed with stage II, ER+ breast cancer in 2014 when she was 26 years old and learned of her BRCA1+ status after her diagnosis. After completing surgery and chemotherapy, she sought ways to give back to the cancer community. She became a Young Advocate with Living Beyond Breast Cancer in September, 2016, where she was bitten by the advocacy bug. Since training with Living Beyond Breast Cancer, she has reviewed grants for the Department of Defense Breast Cancer Research Program and joined the Johns Hopkins Medicine Young Women’s Advisory Committee for their Breast Cancer Program. Sam is a member of the Young Survival Coalition’s Respected Influencers through Science and Education (RISE) class of 2020 and continues advocacy efforts at Johns Hopkins.
Other advocacy includes giving testimony to the Maryland State Senate Finance Committee to lobby for Maryland insurers to cover the cost of fertility preservation and media coverage for the same bill. Her personal and professional interests came together when she accepted a position as an Adolescent and Young Adult Patient Navigator with the Ulman Foundation, where she fostered a community of support for young adults ages 15-39 impacted by cancer.
Mentor: Laurie Hutcheson, M.S.
Laurie Hutcheson is an invasive lobular breast cancer patient advocate & Executive Director of the Lobular Breast Cancer Alliance (LBCA)
Laurie has been a leader in health care program development and management for over 40 years. Her experience includes executive roles in Massachusetts health and human services agencies, in behavioral health provider organizations and managing her own consulting business. Laurie joined LBCA as a volunteer following her diagnosis and treatment for invasive lobular carcinoma (ILC) in 2018. In May 2020, in lieu of retirement, she took over as LBCA’s executive director. Laurie is committed to working collaboratively with patient advocates, scientists, and clinicians in the U.S. and globally to raise awareness about ILC and to promote vitally needed ILC research.
Laurie is a graduate of the National Breast Cancer Coalition’s Project LEAD. She is also an active research advocate in the Dana Farber/Harvard Cancer Center Breast Cancer Advocate group, and Komen Advocates in Science (AIS), and is on the board of the National Breast Cancer Coalition. She is a peer counselor with After Breast Cancer Diagnosis (ABCD), and a member of the MBC Alliance and of the European Lobular Breast Cancer Consortium. She received her master’s degree from the Harvard TH Chan School of Public Health.
Twitter: @lobularBCA
Mentor: Marina Ivanovskaya
Marina’s goal is to support young breast cancer survivors and to encourage patient-centered, safe, and innovative breast cancer research. She has attended several different scientific conferences and advocacy trainings, including The Project LEAD Institute by the National Breast Cancer Coalition.
Marina hopes to contribute to a meaningful connection between doctors, researchers, and patients and to facilitate the use of complementary (integrative) medicine in the cancer care arena and access to healthcare.
Marina has served as a consumer reviewer with the Department of Defense Congressionally Directed Breast Cancer Research Program (BCRP), the Susan G. Komen Research Grant (Advocates in Science), and METAvivor. Marina is also involved in legislative advocacy with different advocacy organizations. She is a member of the Johns Hopkins Oncology Patient and Family Advisory Council (PFAC) and the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center’s INSPIRE Advocacy Program.
Twitter: @4RiseUp
Mentor: Paula Jayne, Ph.D., MPH
After a metastatic breast cancer diagnosis in 2017, Paula Jayne retired from her career as a health scientist at the Centers for Disease Control and Prevention and found meaning in patient advocacy. Dr. Jayne has served as a research advocate reviewing grants with Metavivor, on Mayo Clinic’s breast cancer SPORE, as a 2021 Hear My Voice advocate for Living Beyond Breast Cancer, and as a support advocate on SHARE Cancer Support’s TalkMets helpline. Given a special interest in helping peers with MBC increase their quality of life, she was thrilled to serve as a co-host and guest producer on the short series “The Magic of Palliative Care” and “The Potential of Psilocybin-assisted Psychotherapy” for the Our MBC Life podcast.
Mentor: Caroline Johnson
Caroline Johnson is the Founder of Twisted Pink, a non-profit organization based in Louisville, KY whose mission is to provide hope and connection for metastatic breast cancer patients through bold breakthroughs in research and awareness of the disease.
Caroline started Twisted Pink in June 2014 after being diagnosed with stage III ER+ breast cancer at the age of 39. Twisted Pink was born to fill the gap in research for late stage breast cancer patients. Twisted Pink has directly contributed to advance metastatic breast cancer research since inception. Over $1.2 million in research funding has been raised with collective efforts and institutional matching funds.
Caroline has a BA in Psychology from the University of Louisville. She enjoys writing and public speaking as a way to inspire others to see the blessings in hardships. She also enjoys reading, traveling and golf. She and her husband were raised in Louisville and have three children.
Twitter: @cvanjohnson73
Mentor: Sheila Johnson
Sheila Marie Johnson was diagnosed with stage IV HER2-positive, hormone receptor-positive breast cancer at age 43 in December of 2009. She is a 25-year Air Force veteran, receiving four Air Force Meritorious Service Medals, seven Air Force Commendation Medals, and four Air Force Achievement Medals.
She is an alumna of A Fresh Chapter with trips to India and Kenya and is a Young Advocate for Living Beyond Breast Cancer Young Women’s Initiative Program. She volunteers her time on the Living Beyond Breast Cancer Helpline, offering emotional support to breast cancer patients. She is also a consumer reviewer for the Department of Defense Breast Cancer Research Program and METAvivor, where she reviews proposals for funding.
Sheila is a facilitator and a Board Member for Breast Cancer Recovery and a 2020 participant in the Escape to Thrive Leadership Conference. She’s a Komen Scholar and on the Komen Advocates in Science Steering Committee. She’s an active member of the National Breast Cancer Coalition and is a 2015 graduate of NBCC’s Project Lead Institute. Sheila is an integral part of The Metastatic Breast Cancer Project and a co-host for Our MBC Life Podcast. She attended the San Antonio Breast Cancer Symposium in 2015 and 2019. She has received scholarships for the American Association for Cancer Research Annual Meeting and the Health and Racial Disparities Conferences.
Sheila is featured in a Pfizer documentary called A Story Half Told and featured in Breast Cancer Wellness Magazine. Her platform raises awareness about black women’s racial and health disparities when diagnosed with breast cancer. She is also a clinical trials advocate ensuring black women are a part of the conversation for recruitment and active involvement in research.
Twitter: @swaggsheila1
Mentor: Abigail Johnston, Esq
Abigail is a recovering lawyer, living in Florida with her husband and two boys, and has lived with de novo Stage IV Metastatic Breast Cancer (MBC) since 2017. Advocacy and brining the patient voice to all levels of health care and research is her passion and Abigail is honored to serve as a mentor with GRASP as well as on the Inaugural Advisory Board. You can find her musings on her blog, www.NoHalfMeasures.blog.
Twitter: @AMJohnston1315
Mentor: Lianne Kraemer
Lianne Kraemer received both her Bachelor of Health Science and Master of Science degrees from the University of Kentucky. She worked as a Pediatric Speech Language Pathologist specializing in feeding, swallowing and communication disorders in infants, toddlers and young children with neuromotor impairments. At 37 years old Lianne was diagnosed with stage 2 breast cancer. Despite receiving aggressive treatment, her cancer quickly returned as stage IV MBC. Lianne’s initial metastatic diagnosis was that of brain metastases only. She has never presented with disease outside the CNS.
Knowing there is no cure for MBC, Lianne became an outspoken advocate for increased funding for MBC research. She is the co-founder of the Chicago Metsquerade, a gala benefiting METAvivor. Her fundraising has raised over $400,000 for MBC focused research. Her work in advocacy has led to two features in TIME Magazine, speaking engagements on conference panels and pharmacy company meetings, and requests to review research grants. Lianne serves as a patient advocate for the Dana Farber Cancer Institute. Lianne also served as patient advocate on the task force that developed the ASTRO Clinical Practice Guideline on Radiation Therapy for Brain Mets. Lianne is a member of MBC Alliance’s Breast Cancer Brain Metastasis (BCBM) Initiative: Marina Kaplan Project to address research needs of breast cancer patients living with CNS metastasis. Lianne is one of the founders of the website mbcbrainmets.org, a resource for patients with breast cancer CNS metastasis.
Twitter: @lianne_kraemer
Mentor: Patricia Kellerhouse
Patti Kellerhouse has a + 30-year history in clinical and pre-clinical research for major pharmaceutical companies in human and veterinary health. She has co-authored 3 major papers and over 16 abstracts in refereed forums. Her original diagnosis occurred in 2008 and after 9 years disease free her oncologist said she had done “everything right” (lumpectomy, clinical trial with Paclitaxel, radiation, aromatase inhibitor treatment (7.5 years)) for her ER+ HER2 breast cancer but was in the unlucky percentile to progress with 5 liver metastases. Ironically, her breast cancer disease aligned with her career and while working in clinical development cancer research she received her MBC diagnosis the same month (Oct2017) as the FDA launch of a new CDK 4-6 inhibitor she had worked on for years and eventually took as her first line treatment. She continues treatment with the CDK4-6/Fulvestrant regiment and is doing well. Patti has been a consumer reviewer for the DOD BCRP since 2013, an avid Dragonboat paddler she is also on the board for Look Beyond Cancer a non-profit which runs the Rose Regatta Dragonboat festival a major fund driver for the RED ROSE program (Responsible Early Detection) in Las Vegas. She volunteers for ACS-CAN network, was nominated for the Twisted Pink Robert L. Delaby Advocate Award to attend ASCO in 2022. And due to COVID, training for the National Breast Cancer Coalition 2020 Project LEAD® Institute will happen in 2022. She recently was excited to join GRASP. Her spare time is spent enjoying her family including four lovely grandchildren, horse, pony and dog!
Mentor: Cathy Knowles
My name is Cathy Knowles and I live in Pensacola Florida with my husband and two dogs. I was diagnosed de novo stage 4 with metastasis to my liver in January of 2017. I am ER+HER2+ and still on my first line of treatment. I retired in 2019 after spending most of my career as a research associate/lab manager in several basic biomedical research programs. In addition to acting as a mentor for GRASP, I am a peer mentor with Project Life, completed the Hear My Voice advocacy training program with Living Beyond Breast Cancer (LBBC) in 2020 and am currently serving as a patient advocate reviewer with Metavivor. I am passionate about helping others learn about MBC.
Mentor: Ellen Landsberger, M.D.
Ellen is a retired OBGYN/Maternal Fetal Medicine specialist and since then has pursued her other passion- politics, especially related to women’s health. She has been living with breast cancer for 27 years but did not get involved in advocacy until she was diagnosed with, and treated for metastatic breast cancer (MBC) in 2017. She is a patient advocate at Memorial Sloan Kettering Cancer, the Translational Breast Cancer Research Consortium, and the IMAXT project out of CRUK – Cancer Research of United Kingdom. Ellen is a Project LEAD graduate and enjoys lobbying with the National Breast Cancer Coalition. She recently joined the MBC Alliance as an independent patient advocate and is excited to join GRASP as a patient advocate mentor. Ellen lives in NYC and goes to as many concerts and theater productions as she can!
Twitter: @EllenLands
Mentor: Jamie LaScala
Jamie LaScala is a survivor of Stage III inflammatory breast cancer and a breast cancer patient advocate with a special interest in supporting clinical and translational research. She is a Patient Advocate Board Member for the Translational Center of Excellence in Breast Cancer at Penn Medicine and a Patient Advocate representing the University of Pennsylvania for the Translational Breast Cancer Research Consortium (TBCRC). She has served as a Consumer Reviewer for the Department of Defense Breast Cancer Research Program (BCRP), and is a member of the American Society of Clinical Oncology (ASCO)’s Breast Cancer Guideline Advisory Group. A graduate of the National Breast Cancer Coalition (NBCC)’s Project LEAD, she is a Young Advocate-Leadership Volunteer with Living Beyond Breast Cancer (LBBC), active with Komen Advocates in Science (AIS), has contributed to articles including for WebMD, and participates in a global molecular tumor board. A former executive in investment management for two decades, she has a BS from Thomas Jefferson University, having spent a semester at the University of Salamanca in Spain, and completed a Certified Investment Management Analyst (CIMA) program through Wharton Executive Education. She was part of the fall 2021 cohort for the Entrepreneurship for Biomedicine (E4B) program through The Washington University School of Medicine in St. Louis. In 2022, she joined the Strategy and Business Development team at Nemours Children’s Health.
Mentor: Julia Levine
Julia is a metastatic lobular breast cancer thriver. She is a founding Steering Committee Member of the Lobular Breast Cancer Alliance (LBCA) since its inception in 2016. Her roles are Research and Publications Curator, Metastatic Lead Advocate, and Patient & Research Advocate. She is the metastatic liaison between LBCA and the Metastatic Breast Cancer Project, Living Beyond Breast Cancer, and BreastCancerTrials.org.
She is a member of the Cancer Support Community-L.A. and a peer mentor in the stage 3/4 breast cancer support group since 2013 to the present. She has also been involved as an advocate with Metavivor and GRASP. She has attended the San Antonio Breast Cancer Symposium, Theresa’s Research Foundation MBC Research Conference, Harvard Medical School conferences, and is on the planning committee for the International Invasive Lobular Cancer (ILC) Symposium at University of Pittsburgh.
She participates in research advocacy to advance her knowledge, educate others, and to provide a patient perspective in the development and implementation of studies in both metastatic and lobular breast cancer.
Twitter: @jackel626
Before her breast cancer diagnosis, Gwen Manchion earned a bachelor’s degree in communication, followed by an associate’s degree and state license as a physical therapist assistant. Gwen was shocked to learn of her diagnosis in 2020 of stage 3C HR+/HER2-neg invasive lobular carcinoma (ILC). Despite undergoing a bilateral mastectomy and chemotherapy, 5 months later, she was found to have several small brain metastases. After a year of ups and downs, two lines of failed therapies, and four rounds of stereotactic radiotherapy to control these pop ups, Gwen began Enhertu after discovering her breast cancer was HER2-low. She has remained stable with no new brain metastasis since July 2022.
Gwen is beginning her work in advocacy and hopes to focus her efforts on ILC, pregnancy-associated breast cancer, increasing access to brain scans earlier in a breast cancer diagnosis, and increasing access to clinical trials for patients with CNS metastases. She is now a member of the Breast Cancer Brain Metastasis Initiative: Marina Kaplan Project of the Metastatic Breast Cancer Alliance. Gwen lives in the Pacific Northwest and is a state licensed physical therapist assistant. In 2012 and 2018 she welcomed her daughters and continues to live in Seattle with her family.
Twitter: @SmithStef
Mentor: Joan Mancuso
Joan Mancuso has been living with metastatic breast cancer since 2007. She was diagnosed with early stage breast cancer in 2003. For over a decade Joan has been involved in many breast cancer projects. She was an advocate member of the Translational Breast Cancer Research Consortium with Abramson Cancer Center, University of Pennsylvania. The TBCRC conducts high-impact clinical trials. Joan was also a member of the planning committee for the Metastatic Breast Cancer Research Conference’s annual meeting, working to develop the meeting’s advocate program. Through SHARE Cancer Support Joan was interviewed on talk radio to raise awareness of MBC during Breast Cancer Awareness Month. She facilitated a SHARE telephone support group for people living with MBC and wrote news stories about cancer conference sessions for an MBC newsletter, among many other projects over the years. Joan also participated as an advocate in the AACR’s Scientist<->Survivor Program. Joan is currently a volunteer in ASCO’s TAPUR Publications Group. She contributed to the section on patient education and access to the 2023 ASCO update on the use of biosimilars in oncology, published in JCO Oncology Practice. Joan was a consumer reviewer for the DOD Breast Cancer Research Program for several years and an advocate on scientific grant proposals and clinical trial protocols at major cancer centers. She is a former special reports editor on a news desk for financial news.
Twitter: @2020VisionGirl
Mentor: Deb Maskens
Deb Maskens is a long-time kidney cancer patient and patient advocate. Along with another patient, she Co-Founded Kidney Cancer Canada in 2016 and played an active leadership role for 10 years. During this time she focused on advocacy, health technology assessment, patient support and navigation.
Deb currently volunteers for several kidney cancer patient organizations including the Kidney Cancer Association in the USA. In recent years she served as a Patient Advocate on the NCI Renal Task Force and as Co-Lead of the Canadian CanCertainty Coalition campaign of 35 cancer organizations advocating for health policy change (CanCertainty.ca). Previous roles include 10 years as a Founding Member and Vice Chair of the International Kidney Cancer Coalition (IKCC.org) based in Amsterdam.
In 2016, Deb was awarded the Canadian Governor General’s Meritorious Service Medal, Canada’s highest award for her dedication and professionalism in patient advocacy and volunteer service. Deb is a frequent speaker at national and international cancer meetings where she provides the patient voice perspective, along with sound advocacy knowledge and experience.
Twitter: @DebMaskens
Mentor: Ginny Mason, R.N.
Ginny Mason is a nurse who was diagnosed with stage 3C inflammatory breast cancer 25 years ago. Her diagnosis of a less common and very aggressive breast cancer led her down an over 20-year career path in patient advocacy. She has been with the Inflammatory Breast Cancer Research Foundation since its inception in 1999 and currently serves as the executive director.
Ginny works in a variety of capacities as a board member, advisor, mentor, grant reviewer and medical consultant for a variety of organizations, including ASCO, the Department of Defense, the American Association of Cancer Research, the U.S. Food and Drug Administration, Komen Advocates in Science, and various other advisory/consultant roles with other organizations.
Ginny is a graduate of the Project Lead Institute and serves as a member of the breast committee of the Southwest Oncology Group (SWOG), the Indiana University representative for the Translational Breast Cancer Research Consortium (TBCRC), and the Breast Cancer Brain Metastasis Initiative: Marina Kaplan Project of the Metastatic Breast Cancer Alliance.
Twitter: @IBCnurse, @IBCResearch
Mentor: Julia Maués
Julia Maués was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn’t do while pregnant and discovered the cancer had spread to her brain, liver, and bones. After many treatment setbacks, her cancer began to respond to treatment. Cancer is part of Julia’s life, but it doesn’t define her. Her goal is to make an impact while she is alive in the lives of others dealing with this disease. She has found meaning and purpose in working with patients and researchers to make cancer research more patient-centered, innovative, and inclusive.
Twitter: @itsnot_pink
Mentor: Yvonne McLean Florence
Yvonne is a breast cancer survivor, independent patient advocate, and the former President/Founder of Sisters R Us Circle of Survivors. She completed the Project LEAD program in 2018. The recent focus of her advocacy is on clinical trials, community driven research, DEI, and quality of care, life, and survivorship for cancer patients. She represents Delaware County in the 67 Women, 67 Counties: Facing Breast Cancer in Pennsylvania traveling photo exhibit, and currently serves as a peer reviewer for the NIH/NCI SPORE Programs and patient reviewer for the PCORI Merit Awards program. She also serves on the National Coalition for Cancer Survivorship (NCCS) – Ellen Stovall Award Selection Committee. Yvonne continues to be public about her participation in a clinical trial to address issues involving barriers to access, education, and to increase minorities participation.
Mentor: Marlena Murphy
In 2018, Marlena Murphy was diagnosed with stage III triple-negative breast cancer. In 2019, as a volunteer patient advocate for My Style Matters, she attended the San Antonio Breast Cancer Symposium with the very first GRASP poster walkthroughs. Additionally, Marlena serves as a volunteer on the Emory Winship Cancer Institute Patient and Family Advisory (PFA) Council. Because of Marlena’s commitment to advocacy and seeking knowledge beyond the realm of breast cancer, she was offered a position as a Program Manager with GRASP in 2021. Now, she serves as an enthusiastic team member, and coordinates and leads the GRASP Huddles.
Marlena has participated as a DOD Breast Cancer Research Program (BCRP) consumer grant reviewer, and was featured in the 2022 AACR Cancer Disparities Progress Report. She also works as a Community Advocate for TurningPoint Breast Cancer Rehabilitation. Marlena’s role as a patient advocate was one she did not plan on during her lifetime, yet, she accepted it and decided that her diagnosis would not be in vain. Marlena is a mother to a teenage daughter and enjoys helping others. As a result of her diagnosis and desire to help people, Marlena entered grad school in 2020 and became a Clinical Mental Health Counselor in May 2023. Marlena currently provides therapy for individuals experiencing homelessness and will also provide pro bono therapy for breast cancer patients and survivors.
Twitter: @MarlenaDM
Mentor: Lori Petitti, B.S.
Lori Petitti is a lobular breast cancer survivor. She attended the first International Lobular Breast Cancer Symposium in 2016 and became one of the founding members of the Lobular Breast Cancer Alliance (LBCA). She is on the board for the Breast Cancer Care & Research Fund and a volunteer mentor with After Breast Cancer Diagnosis (ABCD) and SHARE cancer support. Lori is a graduate of the National Breast Cancer Coalition’s Project Lead Institute and has served as an advocate reviewer for the Department of Defense Breast Cancer Research Program. She is committed to research advocacy and mentoring newly diagnosed patients.
Twitter: @hiplinemedia
Mentor: Silke Pflueger, Ph.D.
Silke Pflueger was initially conscripted to the breast cancer world in 2013 with early HR+/HER2- cancer. In 2019 she discovered that her sciatic pain wasn’t a slipped disk, but a large lesion in her sacrum. Having a scientific background as a PhD in Engineering, and many conferences as an attendee and conference chair she has shifted her focus to learn as much about the disease as she can, helping others with breast cancer to understand treatments and find clinical trials.
Twitter: @silke4senate
Mentor: Teri Pollastro
Teri Pollastro was diagnosed with metastatic breast cancer in 2003 when her children were 3 and 7. Since then, she has been involved in a variety of advocacy projects both locally and nationally. She currently serves as the co-chair for the NW Metastatic Breast Cancer Conference and the Metastatic Breast Cancer Alliance Research Task Force Committee. Teri is the research advocate representing the University of WA for the Translational Breast Cancer Research Consortium and serves on numerous grants as an advocate/advocate mentor. Teri is an Advocate in Science (AIS) for Susan G. Komen and serves on their metastatic breast cancer patient committee.
Twitter: @TPollastro
Mentor: Bob Riter, MHSA
Bob Riter has been active in cancer advocacy and education since his diagnosis with breast cancer in 1996. More recently, he was diagnosed with prostate cancer and was found to have a CHEK2 mutation. For many years, he was the executive director of the Cancer Resource Center of the Finger Lakes, a locally-focused support organization in Ithaca, NY. Now, Bob is the patient advocate with Cornell University’s Physical Sciences Oncology Center where he works to connect cancer researchers, students, and the local cancer community. He’s written many newspaper columns about his experiences in the cancer world and likes to build bridges between patients, researchers, family members, and clinicians.
Twitter: @bobriter
Mentor: Sharon Rivera-Sanchez
Sharon Rivera Sanchez is the Founder and Director of Trials of Color and Saving Pennies 4 A Cure, non-profit 501-C3 organizations founded in 2018. Trials of Color educates, advocates, and empowers cancer patients with a primary focus on diversity in clinical trials, awareness, and screening. The organization advocates and educates for and on behalf of African Americans and other underserved minorities.
In 2015, Sharon was diagnosed with triple negative breast cancer; a life changing experience both for her and her family. She channeled her inner strength to fight the disease and this action became a stepping stone towards her mission to help cancer patients, while educating and being a voice for the voiceless. Prior to being the Founder and Director of her non-profits, Sharon worked in sales and business management for 15 years with a leading insurance & financial services institution.
Twitter: @SP4acure
Mentor: Ingrid Roper
Ingrid received her Stage IV metastatic ER/PR+ diagnosis in 2013, a recurrence from Stage IIB just five years prior. Ingrid is a writer, editor, book reviewer and essay coach and approaches patient advocacy through the lens of storytelling as well as science and research. Ingrid has participated as a patient advocate in METAvivor Stage IV Stampedes and informally mentors newly diagnosed metastatic breast cancer patients. Ingrid enjoys reading, yoga, pilates, hiking, traveling, telling stories on The Moth stage, and spending time with her friends and family, including her two college-aged sons.
Twitter: @IngridRoper
Mentor: Barbara Segarra-Vazquez
Bárbara Segarra-Vázquez, D.H.Sc., has been a faculty member at the University of Puerto Rico for more than 30 years, was the Dean of the School of Health Professions for seven years, and is the Principal Investigators of a R25 training program for young investigators funded by NIMHD (R25MD007607). She is a two-time breast cancer survivor and is very active as a research advocate. Her main focus as an advocate is to increase diversity in clinical trials. She is a member of SWOG Cancer Network Patient Advocates Committee and the Cancer Care Delivery Committee. She serves on the Patient Advisory Committee for ASCO’s Cancer LinQ, and is the Chair of the Susan G. Komen Advocates in Science Steering Committee. She is also a member of the External Advisory Panel for the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. She has served several times as a consumer reviewer for the Breast Cancer Research Program of the Department of Defense.
Twitter: @barbarasegarra
Mentor: Kelly Shanahan, M.D.
In 2008, Kelly Shanahan had everything going for her: a busy and successful ob-gyn practice; a precocious 9-year- old daughter; and a well used passport from traveling all over the world with her family to attend conferences, with a liberal dose of vacation on the side. When she was diagnosed with stage IIB breast cancer in April, she considered it a mere bump in the road.
And for five years, breast cancer was an aside, something to put in the past medical history section of forms. Even when she developed sudden back pain, Kelly never thought it could be breast cancer rearing its ugly head – a pulled muscle, a herniated disc maybe, but not what it turned out to be: metastatic breast cancer in virtually every bone in her body, with a fractured vertebrae and an about to break left femur. Kelly was diagnosed on her 53rd birthday.
Neuropathy from the chemo did cost her her career, but she has found a new purpose in advocacy. Kelly is on the board of METAvivor, a member of the Metastatic Breast Cancer Alliance, a Komen Advocate in Science, a grant reviewer, and research advocate. Kelly Shanahan is a mother, a wife, a daughter, a doctor, a woman LIVING with metastatic breast cancer.
Twitter: @stage4Kelly
Mentor: Terri Shipp, M.S.
Terri Shipp shares a passion for science and the education of women affected by breast cancer. She was personally affected by the disease as a young woman and 12 years later was diagnosed with metastatic breast cancer. She holds a master’s degree in science in the field of electrical engineering and has actively attended many conferences and seminars on breast cancer.
She graduated in 2022 from Living Beyond Breast Cancer’s (LBBC) Hear My Voice Metastatic Advocacy Program and the National Breast Cancer Coalition’s Project LEAD Program. She also supports METAvivor’s Michigan #LightUpMBC and the Stage IV Stampede teams.
In 2021, she became an advocate for GRASP and has participated in multiple poster reviews with the authors of various scientific studies. She is excited to be a part of the GRASP program.
Mentor: Denise Smith
Denise Smith has Bachelor’s degrees in Nursing and Microbiology. As well as is a recent graduate of the NBCC Project LEAD program. Over the last three years Denise has participated as an advocate reviewer for the Department of Defense congressionally directed research program for Breast Cancer. She currently spends time serving on the Breast & Gynecologic Cancers Research Advocate (BGCRA) committee under the direction of Dr. Alana Welm. Denise also recently had the opportunity of representing Metastatic Breast Cancer (MBC) patients during the NBCC Lobby Day in Washington, D.C. As an MBC patient herself, she truly enjoys advocacy and sharing her experiences to help move research forward in finding a cure.Mentor: Jasmine Souers
Jasmine Souers is a passionate advocate for young women and people of color affected by breast cancer. Diagnosed with stage 1 breast cancer at the age of 26 in 2016, Jasmine turned her pain into purpose through volunteerism, entrepreneurship, advocacy and co-founding For the Breast of Us, the first inclusive breast cancer community for all women of color. Today, she is the founding president and CEO of The Missing Pink Breast Cancer Alliance, connecting change agents to improve the lives of people of color affected by breast cancer. She lends her expertise to organizations like the Metastatic Breast Cancer Alliance, Living Beyond Breast Cancer and Mayo Clinic.
Twitter: @MissingPinkBCA, @bravebeauty26
Mentor: Patty Spears
Patty is a 20-year breast cancer survivor and cancer research advocate. She was diagnosed with locally advanced breast cancer at 40 and after neoadjuvant chemo, surgery and radiation, participated in a HER2 vaccine clinical trial. Patty has concentrated her advocacy in clinical trials serving as an advocate on the Translational Breast Cancer Research Consortium (TBCRC) and the NCI Breast Cancer Steering Committee (BCSC). She is also Associate Group Chair for Advocacy of the Alliance for Clinical Trials in Oncology (NCTN) as well as Chair of the Alliance Patient Advocate Committee. Ms. Spears is currently working as a scientific research manager and patient advocate at the University of North Carolina at Chapel Hill, where she leads the UNC Lineberger Patient Advocates for Research Council (PARC) and the UNC Breast SPORE Advocates. At UNC she focuses on communicating science and clinical research to the public and facilitating the engagement of patients with basic and clinical researchers. She also has an interest in patient reported outcome measurements (PROMs) in drug development.
Twitter: @paspears88
Mentor: Samara Spence, JD
Samara has been living with metastatic breast cancer since 2021, when she was diagnosed de novo at the age of 40. Samara is a major proponent of breast cancer research, particularly research addressing unmet medical needs. She has been serving as a patient advocate for GRASP since 2022. She also serves as a consumer reviewer for the DOD Breast Cancer Research Program, where she reviews scientific research grant proposals with the potential to dramatically advance treatment and reduce mortality. And she is an active volunteer with the Smith Center for Healing and the Arts, a DC philanthropic organization that provides services to cancer patients and their families, with a focus on mental and emotional healing. In her professional life, Samara still works as an attorney in Washington, DC.
Mentor: Sarah Wald
In March 2019, Sarah was 39 years old, a recently tenured professor at the University of Oregon, and training for her first century (100 mile) bicycle ride when she noticed a small lump in her breast. After a whirlwind of appointments and mishaps, Sarah was diagnosed with ER+/PR+/HER2- de novo metastatic breast cancer.
With a background in environmental organizing, Sarah knew advocacy and organizing would be central to her diagnosis response. Sarah is an alumna of Living Beyond Breast Cancer’s Young Advocate Program, a Metavivor volunteer (Oregon’s State Captain for the Stage IV Stampede), and a GRASP mentor. Shortly after diagnosis, Sarah was selected for a First Descents trip where she spent a week white water kayaking with others diagnosed with cancer under 40. This trip inspires her devotion to #OutLivingIt through hiking, biking, snowshoeing, and kayaking whenever she gets the chance.
Sarah continues to work full time as Associate Professor of Environmental Studies and English at the University of Oregon. In 2022, Sarah’s beloved stepdaughter turned 18 and graduated high school, milestones Sarah wasn’t sure she’d be alive to celebrate.
Twitter: @SarahDWald
Mentor: Stephanie Walker, R.N.
Stephanie Walker was diagnosed in July 2015 with de novo MBC. A retired RN with close to 40 years of clinical practice and 3 years teaching in a Community College. Her experience has been pediatric and adult critical care working in level 1 trauma centers and critical access hospitals. The last 15 years of her nursing career were with Hospice care. She is a member of many organizations, local- and national-based, and a recipient of the Spirit to Impact award. She is also project lead on an initiative called BECOME (Black Experience of Clinical Trials and Opportunities of Meaningful Engagement), as part of the MBC Alliance. She is advocating for men and women in rural areas for equal access to quality healthcare, treatment modalities, and resources. She does not want anyone to feel alone, isolated, or defeated.
Twitter: @faceofstage4
Mentor: Lynda Weatherby
Lynda Weatherby has been living with Metastatic Breast Cancer since May 2013, and probably for years before that. Her diagnosis of MBC came 12 years after her early-stage diagnosis of “Stage 0 DCIS” and bilateral mastectomy 2001. She was told that “one rogue cell” must have been the cause of the metastatic spread throughout her bones, to her brain, and a very painful facial nerve over a decade after her first diagnosis. Her treatment has included radiation to the spine, two rounds of Gamma Knife radiation to the brain and facial nerve, and continual systemic hormonal treatment since 2013. After progression in 2018-2021, Lynda is on her first chemotherapy now and doing well with a “new normal”.
Lynda is passionate about MBC research and advocacy to make things better for all MBC patients. She is currently serving on the Executive Committee of the MBC Alliance, and on the production team of the Our MBC Life Podcast. She also co-founded and co-chairs the Northwest MBC Conference in Seattle, which will resume as an in-person event September 2022.
Twitter: @lyndaweatherby
