2024 Advocate Scholars
Jesutomi Linus Akomolafe
Nigeria, Africa
Jesutomi Akomolafe is a passionate cancer research advocate and global health consultant
dedicated to transforming the landscape of cancer care in Africa and beyond.
Jesutomi has had an incredible run in Nigeria's journalism space up until 2022 when his close
friend died from Breast Cancer at a time when the doctors were on strike in Nigeria.
He holds a Bachelor of Arts degree in Mass Communication, professional training in Public
Health, Cancer Research, Clinical trial, Communication and Health Advocacy. A recognized
voice in the fight against global health inequity Diversity and Inclusion in Clinical trials, Jesutomi
serves on advisory board of People Living with Non Communicable Disease in Nigeria, he is a
member of American Society of Clinical Oncology (ASCO) and Ashburn Professional Speaker
Club.
Jesutomi's efforts extend beyond borders; he has collaborated with organizations in America,
and Africa (Ghana, Nigeria, South Africa, Kenya, Uganda and Benin Republic) advocating for
equity in cancer care.
With a unique blend of expertise in Public Health Advocacy and journalism, he has committed
his life to supporting underserved cancer patients. Through his work with Nigerian Cancer
Society, Help The Pediatrician, The Guardian, Lagos Urban Study Group, University of Lagos,
Nigerian Slum/Informal Settlement Federation in Irede and Trials of Color, Jesutomi has
pioneered initiatives that provide cancer screenings to rural men and women, empowering
communities with vital health information.
He is a firm believer that a change mindset is all you need to change a narrative. And our zip
code, race, religion or colour, should not define how we are passive, treat and receive medical
treatment.
Rebecca Angus, Australia
Rebecca has been a member of the consumer advisory panel at Breast Cancer Trials since 2020. She is currently serving as the consumer advisor on the Neo-N trial.
In addition to this role, she has participated in other advocacy activities, such as the Breast Cancer Trials Australian Women's Health Diary and Q&A sessions. Rebecca has also contributed to publishing editorial pieces and podcasts. Her advocacy focuses on supporting young women impacted by breast cancer, and she has a particular interest in fertility preservation in cancer treatment.
Natalie Belcher, Deleware, U.S.A.
My name is Natalie Belcher, and I am a Survivorship Specialist with the Delaware Breast Cancer Coalition here in Delaware (DBCC). I retired in 2023, after teaching in Higher Education for 35 years, and was offered a position with DBCC, a non-profit Organization in my home state. I began my Breast Cancer journey on January 19, 2015. I was 50 years old and truly at a turning point in my life. When I heard my final diagnosis of Stage II B Triple Negative Breast Cancer, I asked my surgeon “so what are we going to do about it?” You see, I had turned a pivotal age, and was thinking that it was my time!
So, for over 20 years, through the journeys of many very dear friends, I had been active in supporting the endeavors of the Delaware Breast Cancer Coalition (DBCC). Now, it was time to not only support, but to actively give back through service. I am now entering my tenth year as a Survivor, and my second year with the agency, and I can truly attest to the levels of dedication and commitment and the enduring passion of each member of our Team. As a 2024 Project LEAD Certified Advocate Graduate with the National Breast Cancer Foundation (NBCC), I have been trained in the Science of Breast Cancer as well as in the Public Policies that prioritize the continual strive to end Breast Cancer.
It is my intention to be a lifetime Advocate in the fight to eradicate Breast Cancer not only for my Daughter and Granddaughter, but also for All. I am a Survivor!!
Ishira Bhattacharya MS., Tamluk, India
I, Ishira Bhattacharya, hold an MBA degree and proudly serve as the Head and CEO of MAS Clinic and Hospital, a dedicated healthcare facility focusing on cancer treatment in rural West Bengal, India. Passionate about patient advocacy, I play a crucial role within the hospital's cancer department, with a particular focus on breast cancer care. In addition to my work at MAS Clinic and Hospital, I actively engage with two nonprofit patient advocacy organizations in rural India: MAS Rural Initiative and Narikeldaha Prayas. Through these organizations, I continue to champion for the rights and well-being of cancer patients, striving to make a positive impact in the community. As a member of the home care team, I am committed to enhancing the quality of life for cancer patients, both within the hospital and in the comfort of their homes. My dedication to holistic care and patient advocacy underscores my unwavering commitment to supporting individuals throughout their cancer treatment journey.
Christine Carpenter, Ed.S., Iowa, U.S.A.
Christine Carpenter, Ed.S., is a retired school psychologist and 31-year breast cancer survivor. She is Advocacy Chair for the Cedar Valley Cancer Committee’s Beyond Pink TEAM and represents the TEAM on the National Breast Cancer Coalition’s (NBCC) 501c4 Board. She is NBCC’s Iowa Field Coordinator and Team Leader and administers the all-Iowa Breast Cancer Advocacy Network. Christine has served as a mentor for NBCC’s Project LEAD and a Consumer Reviewer for the California Breast Cancer Research Program, the Department of Defense Breast Cancer Research Program, Rising Tide Foundation, and the Patient Centered Outcomes Research Institute.
Ciara, Lowell, Michigan, U.S.A.
I was born, and raised in Ireland, and still have all my family over there, currently I am living in Lowell, Michigan since 1996.
I am married and we have a teenage son who just started high School.
I am a seasoned professional horse trainer. Horses have been in my life for a long time.
I was diagnosed with lobular breast cancer in September of 2022.
I have a keen interest in patient advocacy.
I am a active patient advocate with the lobular breast cancer alliance, in addition to advocating,and supporting my local Gilda's breast cancer group. I have attended the ILC convention in Pittsburgh in 2023, and the sabcs in San Antonio 2023.
As of July this year I completed, and graduated the project lead with the NBCC, and I was so happy to advance my knowledge in clinical research in the scientific end of patient advocacy.
As always I really enjoy meeting fellow patient advocates sharing our journeys, and ideas it is always so enlightening, and encouraging.
I love the opportunity to learn more, and to network with everyone.
Beth Davis
Hi my name is Beth Davis. I was diagnosed with Metastatic Lobular Cancer in 2020 as I turned 60 years old. With an ER+ Breast Cancer, I wasn’t surprised that it had resurfaced in my bones after 15 years.
Since my metastatic diagnosis in 2020, I have been on 2 CDK4/6 inhibitors and Xeloda but have now progressed onto IV chemo.
Because I retired from Big Pharma in Oncology Sales, I’m now energized by my oncology advocacy projects. These include supporting a young French researcher at DFCI, who is researching tamoxifen resistance in patients with lobular breast cancer and also supporting a MSKCC researcher working on an important question for HER2-mutant metastatic invasive lobular cancer.
I look forward to attending SABCC in San Antonio this December as I love sharing breaking research results with my MBC friends.
Rev Dr. Cassandra Graves, Pennsylvania, U.S.A.
Born in West Philadelphia, she has been a resident of Delaware County since 1982. She graciously served as assistant pastor for eleven years and as Senior Pastor & CEO since 2022, of Evelyn Graves Ministries Church and Artistic Director of Evelyn Graves Drama Productions.
An administrator, performing arts consultant, motivational speaker, travel advisor, entrepreneur, international cultural ambassador,12th District Police Chaplain, serves on the President's Cabinet of Black Clergy Philadelphia and Vicinity. She authored three books with the third a bestseller, "Unstoppable Leaders."
As a passionate leader and former broadcast journalist for NBC, she has several citations and numerous awards from state and local government including MLK Award from University of Penn, NAACP, PA Council on the Arts, City Council and the House of Representatives. Simply Dr. Graves cheerfully utilizes her God-Given abilities to bring wholeness to the disenfranchised & marginalized.
Cassandra has four earned postgraduate degrees and certifications in the humanities to include Millersville University, University of Massachusetts, Eastern University, Hampton University, International Christian University and Jameson School of Theology.
Her unstoppable unique spirit miraculously fortifies the legacy of her mentor and mother Dr. Evelyn Graves. A future $20 million mission in cultural arts and housing programs in Southwest Philadelphia to help empower and stabilize underserved families and communities.
Hobbies include local and international travel, scuba diving, reading, writing, cultural & performing arts. Dr. Cassandra graciously accepted Christ at an early age and continues in His pathways where she finds immeasurable strength and intense love to help serve humanity.
Aliya Gazamova, Kyrgyz Republic, Eastern Central Asia
My name is Aliya Gazamova. Since the beginning of this year, I’m the head of
Public Foundation Ergene. I have been working in this fund since 2011 as a program
assistant and to the chairperson now, in 2024.
PF Ergene is one of NGOs in the Kyrgyz Republic, working for improvement and
resolution of healthcare and social development issues by advocacy through awareness
raising of decision-makers, international organizations, civil society and population.
Ergene actively promotes maintaining of healthy lifestyle: healthy nutrition and physical
activity.
PF Ergene contributes to healthcare and social systems development of the
Kyrgyz Republic, assists vulnerable groups of people; and other programs, directed to
the welfare of society.
PF Ergene is a member of Union for International Cancer Control (UICC) and The
European Breast Cancer Coalition – EUROPA DONNA. I successfully completed
European Breast Cancer Advocate Training Course in Milan, Italy. And now, looking
forward the new knowledges and skills.
Andrea Hans, Health Policy Advisor
Andrea (Ann-dree-uh) is a health policy advisor advocating for effective healthcare reform. With a background in public health, she is passionate about improving health systems, working closely with government agencies, non-profit organizations, and community groups to drive innovative solutions and ensure equitable access to care. She’s also a Tigerlily Advocacy Trainer, empowering advocates to drive change in women’s health.
Loriana Hernández-Aldama
Loriana Hernández-Aldama is an Emmy award-winning journalist, international speaker, 2x cancer survivor, and host of the podcast Stage Free. A global messenger for change, she shares her powerful story of surviving AML leukemia and breast cancer to inspire others and drive transformative change in healthcare. As the founder of ArmorUp for LIFE, a non-profit empowering underserved cancer communities, she is recognized as one of Cancer Health's Top 25 for her impact on cancer patients' quality of life. Sought after as an advisor, Loriana lends her insights to prestigious organizations such as the Foundation for the NIH and the Association of American Cancer Institutes.
2024 Advocate Scholars, P. 2
Hannah Holtkamp, PhD, New Zealand
I am a scientist with a PhD in Analytical Chemistry, and my career has been driven by a passion for helping people through science. I’m deeply motivated by the potential of health technology to improve lives and am always eager to learn about the latest advancements in the field.
One of the biggest challenges I’ve encountered, particularly in healthcare, is that many excellent early-stage research projects with promising applications struggle to become viable, market-ready products for clinical adoption. Additionally, the New Zealand health system can often face several barriers that prevent New Zealanders from accessing the latest health innovations, including limited funding, workforce shortages, risk aversion, and a lack of support for translational research.
Motivated to improve this process, nearly two years ago I began working as the Innovation Development Manager at the Breast Cancer Foundation New Zealand. In this role, I specialize in the scoping, development, and implementation of innovative projects tailored to New Zealand's specific clinical needs in breast cancer. This involves close collaboration with patients, healthcare consumers, clinicians, researchers, and government agencies. By ensuring that suitable research projects are supported by BCFNZ, we aim to bring cutting-edge health science to New Zealanders with the ultimate goal of improving their health outcomes.
mi Akomolafe is a passionate cancer research advocate and global health consultant
dedicated to transforming the landscape of cancer care in Africa and beyond.
Jesutomi has had an incredible run in Nigeria's journalism space up until 2022 when his close
friend died from Breast Cancer at a time when the doctors were on strike in Nigeria.
He holds a Bachelor of Arts degree in Mass Communication, professional training in Public
Health, Cancer Research, Clinical trial, Communication and Health Advocacy. A recognized
voice in the fight against global health inequity Diversity and Inclusion in Clinical trials, Jesutomi
serves on advisory board of People Living with Non Communicable Disease in Nigeria, he is a
member of American Society of Clinical Oncology (ASCO) and Ashburn Professional Speaker
Club.
Jesutomi's efforts extend beyond borders; he has collaborated with organizations in America,
and Africa (Ghana, Nigeria, South Africa, Kenya, Uganda and Benin Republic) advocating for
equity in cancer care.
With a unique blend of expertise in Public Health Advocacy and journalism, he has committed
his life to supporting underserved cancer patients. Through his work with Nigerian Cancer
Society, Help The Pediatrician, The Guardian, Lagos Urban Study Group, University of Lagos,
Nigerian Slum/Informal Settlement Federation in Irede and Trials of Color, Jesutomi has
pioneered initiatives that provide cancer screenings to rural men and women, empowering
communities with vital health information.
He is a firm believer that a change mindset is all you need to change a narrative. And our zip
code, race, religion or colour, should not define how we are passive, treat and receive medical
treatment.
Julia Laursen, Nebraska, U.S.A.
In January 2021, Nebraska native Julia Laursen was diagnosed with stage III-C inflammatory breast cancer at just 32 years old. Julia had to seek out support through online resources as a result of receiving treatment during the COVID pandemic. Her involvement with online support resources led Julia to realize just how much so many patients didn't know about breast cancer, including herself. As a nurse-by-trade, Julia’s personal mission quickly evolved into educating as many people as possible about her own rare and deadly type of cancer, as well as about the overall young adult cancer experience. To gain knowledge, Julia attended conferences and cancer camps for young adult cancer patients. She has attended the International Inflammatory Breast Cancer Symposium, The Ultimate IBC Meetup, True North Treks, Mary’s Place by the Sea, Project Koru, First Descents, and ASCO’s Annual Meeting.
All of this self-sought education led Julia to many unique opportunities. She has been featured on the Face of Hope campaign at Methodist Estabrook, her local cancer center. She hosted an education booth for the IBC Network Foundation My Sister's Keeper walk in 2023, was on a speaker panel at the 2023 NC2 Cancer Summit, and most recently a 2024 Project Lead grad. She started and continues to co-host a monthly online AYA Breast Cancer support group through SHARE Cancer Support. She is currently a co-chair of the working group, partnering with patient-facing groups for ASCOs AYA Co-OP and does Peer to Peer Support for the nonprofit Sharsheret. At the time of writing, Julia has been accepted to participate in A Fresh Chapter’s 2024 Fall Ignite Experience, Bag It’s 2025 Escape to Thrive Leadership Conference, a Base to Summit camp through the Cassie Hines Shoes Cancer Foundation, and a Dear Jack Breathe Now retreat. Through all of these experiences, including becoming an Alamo Advocate, Julia continues to grow her knowledge and find her place in the cancer community, advocating for all breast and AYA cancer patients along the way.
ReShelle Matheny, Illinois, U.S.A.
ReShelle L. Matheny is a committed breast cancer advocate from Illinois. Her advocacy journey began after the heartbreaking loss of her sister to metastatic breast cancer. Just three years later, ReShelle herself was diagnosed with triple-negative breast cancer. As a single mother of five, she turned her personal experience into a mission to motivate others affected by breast cancer to take proactive steps.
Understanding the importance of research, ReShelle enrolled in the National Breast Cancer Coalition’s (NBCC) Project LEAD Institute and graduated in 2022. Eager to contribute, she became well-versed in breast cancer science, immunology, epidemiology, and clinical trial design. Equipped with this knowledge, she aimed to return to her community and play an active role in shaping the research landscape.
ReShelle recognized that leadership in policy was just as essential as advocacy in research. In 2023, she graduated from NBCC’s Public Policy Academy and took on the role of Team Leader for NBCC in Illinois. She has since worked to advance critical legislative and policy goals, securing support from key members of Illinois' congressional delegation, even as a newcomer to the field.
In addition to her advocacy work, ReShelle is the author of Take Charge of Cancer and the founder of Warriors Talk Inc., a nonprofit that encourages individuals to adopt healthy habits before, during, and after a cancer diagnosis. She also hosts the weekly radio show and podcast Warriors Talk, where she advocates and inspires her audience through education.
When she’s not advocating for breast cancer research and policy, ReShelle enjoys writing poetry and spending quality time with her children
Nalisha Monroe, Trinidad and Tobago
Nalisha is a dedicated cancer advocate and patient navigator in Trinidad and Tobago. She has been a patient navigator over the last six years with the Caribbean Cancer Research Institute (CCRI) assisting many persons and their families through their cancer journey. Equitable care has been less forthcoming in developing countries such as Trinidad and Tobago as compared to other more developed countries. There are numerous areas where cancer patients have not been afforded the type of care that patients in developed countries can access. As an advocate, Nalisha is determined to assist in closing some of the gaps that exist. Through navigation, she believes that she can empower patients and create a supportive network that enhances the overall quality of life for those affected by cancer.
The hard reality of a cancer journey hit home for her when her father was diagnosed a few years ago, she returned to Trinidad to be the pillar of support that her family needed at that time. After he passed away she continued to be an advocate for the many patients that came through the doors of the cancer treatment centres in Trinidad. Nalisha believes that patient support and guidance can assist in creating better outcomes for the patient and those are the goals that hold her steadfast as a patient advocate and navigator.
To be able to make any substantial improvements the data and the patient experiences must be collated and presented to the right decision-makers. Without the patient being an active partner in the process, there can be no lasting change. Nalisha invites you to join CCRI the fight against cancer, encouraging everyone to stay informed, get involved, and support our patients in this important cause.
Sharon Merritt, U.S.A.
Sharon was diagnosed with HER2+ breast cancer, after having a mammogram because of a nipple discharge. The surgeon recommended immediate lumpectomy and radiation. Rather than doing the traditional, she chose a holistic journey, researching everything she could find and threw it at the cancer. She also did extensive psychotherapy including EMDR to deal with past trauma as there is an emotional link to breast cancer. In 2020 she heard about about a surgeon in Glendale, CA, Dr. Dennis Holmes who did cryoablation. His assistant set up a consult. At the consultation he said he suspected the nipple and areolar skin changes were Paget’s disease of the breast and recommended a biopsy. On Sept 30, 2020, she arrived at Dr. Holmes’s office for cryoablation and to have the Paget’s nipple removed. Following Dr. Holmes’s recommendation, she did 6-months of Herceptin infusions and at six months she had a clear MRI, ultrasound, and biopsy.
November 2022 she was having some shoulder pain, and an abdominal ultrasound was ordered to see if maybe she had a gallstone and she was shocked by the results. Not only did she have a gallstone, but also had a 4 cm spot on her liver and some spots on her lungs. January ‘23 she started Herceptin, Perjeta and Xeloda. By May everything was clear again. She continued on Herceptin and Perjeta. In January ‘24 spots showed up on the lungs and her medication was switched to Kadcyla.
Over the years since diagnosis Sharon has become a Susan Komen Science Advocate. She attends conferences whenever she can. Sharon’s had the privilege of observing Dr. Holmes perform cryoablation procedures on multiple occasions to support the patient. She also does alternate month webinars with Dr. Holmes educating patients about all facets of breast cancer and together they developed a cape that allows patients to take a shower after surgery without waiting. She spends countless hours on the phone and in her facebook groups answering and encouraging breast cancer patients. And when the opportunity presents itself she connects doctors to doctors and patients to doctors.
Sharon is a mother of 4 girls, 2 are twins, one is no longer with us and grandma to 7 including boy/girl twins. Sharon has degree in aerospace engineering and holds a California teaching credential in Math/Science. She believes attitude is everything and can make a difference the quality of life as a cancer patient.
Renee Nearpass, MSAOM, L.Ac., Ed.M., U.S.A.
In the fall of 2019, at the age of 45, Renee Nearpass was diagnosed with breast cancer. One of her first actions was to reach out to the Breast Cancer Coalition of Rochester (BCCR), where she engaged in both support and educational services and attended young survivor events. Although she enjoyed these gatherings, Renee felt a deep frustration that so many young women were being diagnosed with breast cancer, which fueled her determination to make a difference.
In the winter of 2023, Renee was invited to join BCCR’s Emerging Leaders program, a year-long training initiative focused on research and advocacy. This program included participation in the National Breast Cancer Coalition’s Advocacy Leadership Summit in Washington, D.C. As a survivor advocate, Renee recognized the importance of understanding the biology of breast cancer to effectively engage with community leaders and public officials. In 2023, she attended Project LEAD, receiving a comprehensive scientific education. By 2024, Renee was serving on BCCR’s grant review panel, selecting local faculty and student research grant recipients focused on breast cancer. Additionally, she was appointed as BCCR’s Advocacy Committee Co- Chair and selected as an alternate member of the National Breast Cancer Coalition’s Board of Directors.
Renee is a licensed acupuncturist in New York State, holding a Master of Science in Acupuncture and Eastern Medicine from the Finger Lakes School of Acupuncture and Oriental Medicine at the North East School for Health Sciences, and a Master of Education from the University of Buffalo. She has studied abroad at the Zhejiang Provincial Hospital of Traditional Chinese Medicine in Hangzhou, China, and is a published author in the American Acupuncturist. As the owner of a family practice, Renee frequently treats young adult women facing critical health issues, including breast and gynecological cancers. Their stories further inspire her commitment to understanding the science of breast cancer and advocating for research funding and policy changes to eradicate the disease.
Renee’s mission, both professionally and as a breast cancer survivor advocate, is to help people achieve optimal health and live their best lives for themselves and their families.
2024 Advocate Scholars, P. 3
Megan O'Neil, Venice, CA, U.S.A.
Motivated by her personal journey with breast cancer, Megan O'Neil is a passionate patient advocate focused on advancing cancer research and promoting equitable patient care. Initially diagnosed at the age of 30 and later confronting Metastatic Breast Cancer (MBC) at 36, Megan's participation in clinical trials has profoundly influenced her advocacy trajectory. Leveraging her background as a performer and
writer, Megan has openly shared her experiences as an Adolescent and Young Adult (AYA) cancer survivor through national media campaigns, public speaking engagements, and partnerships with patient-focused
organizations. Her messaging underscores the critical necessity for patient-centered trials and expanded patient access. The title of her latest publication, based on her experiences as a clinical trial
participant, "Until There Is a Cure, Use Me," encapsulates her unwavering dedication to advancing medical research. Based in Venice, CA, with her husband and beloved pup Panda, Megan finds joy in beach walks, hand-building ceramics, and the simple pleasures of quiet mornings with a cup of coffee.
Mary-Gloria Orji, Abuja, Nigeria
Mary-Gloria Orji is a 49 years old and works as a hospitality consultant. However after her breast cancer diagnoses in 2010 she with other patients formed an organization now known as, the Network of People Impacted by Cancer in Nigeria (NePICiN), a patient only advocate group based in Abuja, Nigeria. A 2 times breast cancer survivor, Gloria had seen the gaps in cancer care in her country and is using the group as a platform for cancer patients to share experiences, access psychological care, and push for change and have patients sit at the table when policies on cancer care are being made in her country.
Leatrice Perry-Bethune, Ed.S
Cutler Bay, FL, U.S.A.
Lisa is a retired Educator. She has two amazing daughters. One who serves in the U.S. Navy and the other who attends a Historically Black College/University in Tallahassee, Florida.
Lisa was diagnosed with Stage 3 Invasive Ductile Carcinoma in 2021.
She decided to undergo a bilateral mastectomy with reconstructive surgery with DIEP flap. Her treatment plan included chemotherapy and radiation therapy.
Lisa decided that patient advocacy would be her personal purpose during this amazing journey. It also became crystal clear that disparities and inequalities still exist and it has to end.
Lisa is a member of the National Breast Cancer Coalition (NBCC), Florida Breast Cancer Foundation (FBCF) member and a Project Lead Institute Graduate. She participated in Lobby Day in Washington, D.C. while attending the NBCC Summit 2024.
Ashley Plum, Phoenix, AZ, U.S.A.
Originally from a suburb of Chicago, IL, Ashley Plum pursued her college education at Iowa State University, earning a Bachelor's degree in Interior Design with a minor in Design Studies. After graduating in 2005, she moved to Arizona with her husband, Asa, and daughter, Amelia, immersing herself in restaurant and retail interior design. In 2010, Ashley began a career at Bling 'n Ink, a custom clothing company specializing in designing unique clothing items and accessories for cheer teams and schools.
After receiving a breast cancer diagnosis in 2017, she began some serious soul searching to rediscover herself. Motivated by a genuine desire to help others and contribute to the nonprofit world, Ashley joined Check for a Lump in 2020. Her personal experience as a breast cancer survivor is the driving force behind her commitment to aiding others facing similar challenges. Ashley serves as the Executive Director at Check for a Lump, leading the team with enduring passion, a positive mindset, and a distinctive ability to infuse a challenging subject with a sense of fun and lightheartedness.
Learn more about Ashley at checkforalump.org.
Amy Russell-Parliman, Westbrookville, New York, U.S.A.
​Howdy Y’all!
Amy enjoys sharing her personal story through her advocacy work. She began her Breast Cancer Advocacy as a Living Beyond Breast Cancer-Hear My Voice Advocate Class of 2022. She wants you to know any effort you make to advocate can make a difference for yourself and others. You can focus on research, fundraising, or raising awareness by sharing your story. Self-advocacy starts with finding reliable resources and finding a community where you feel at home and safe. She currently is an administrator for a couple Facebook groups, she also serves in a leadership capacity for Projectlifembc.org and survivingbreastcancer.org. Social media is an easy space for people to share laughs, events, educational tools, and funny memes. She has served as a Consumer Grant Reviewer for the US Department of Defense-CDMRP the past couple of years.
She was diagnosed with early-stage hormone-positive Lobular Breast Cancer in both breasts in 2014. Five years to the day she was diagnosed with Metastatic Breast Cancer in 2019. Her passion for advocacy comes from stories shared by people she has met along the way who shared tips with her over the last 10 years about treatment, side effects, resources, and organizations that help you feel connected and supported while living after a breast cancer diagnosis.
She has 25 years in healthcare working in Diagnostic Imaging. She earned her Masters of Healthcare Administration after her MBC diagnosis. Amy is a Director of Diagnostic Imaging for a Health System in Upstate New York. She enjoys paying it forward by sharing her knowledge of radiology test, preps, and answering questions you may have; She feels lucky to be able to share her experiences as a patient and as a technologist.
Other than being an advocate for herself and others living with Metastatic Breast Cancer-she enjoys volunteering with her local fire company, gardening, playing cards and board games, and spending time with her husband Chris and their 3 fur kids Oliver, Ziva, and Georgia. She enjoys live music, sports, outdoor activities and traveling.
Diane Roth
I am a 29 year survivor of IDC and a 2 year survivor of Pleomorphic Lobular Breast Cancer. I started my advocacy 29 years ago with that first diagnosis, first going to Project LEAD, and ultimately finding my niche as an Advocate in Science for the Komen Foundation. I have served as a grant reviewer for the DOD, CBCRP, and Komen Foundation. My recent diagnosis has raised many questions for me to explore, and a new focus with the Lobular Breast Cancer Alliance. So glad to be here in San Antonio to share the experience with all of you! Thank you for your commitment to cancer research!
Phyllis Stewart, MBA, U.S.A.
I am a passionate advocate as well as a 2x triple negative breast cancer survivor. I have an MBA and a certificate in Breast Cancer Survivorship Navigator Virtual Learning Collaborative.
After my first diagnosis, I became involved with My Style Matters, learning invaluable information about breast cancer. The organization provides resources, support, education, and healthy lifestyle experiences to individuals and communities disproportionately impacted by the disease. When my cancer returned more aggressively nine months later, I applied what I had learned to advocate for myself.
My involvement deepened following the second recurrence treatment completion. I started as a Volunteer Coordinator participating in many community events and now I am serving as the Outreach Manager. My dedication has helped me to facilitate programs that provide women in active treatment with access to low cost locally grown produce, essential health resources, and tools for making tangible, positive changes in their lives.
I draw on my experiences to guide women through their cancer journeys, emphasizing self-advocacy, mindfulness, and community support.
My story is one of resilience, hope, and a commitment to empowering and connecting with others on similar paths.
Kirstin Spencer, England, U.K.
Initially a classical musician (cellist) from the age of 3, Kirstin spent much of her childhood happily herding cows on her cousin’s farm in the Cotswolds of England, U.K. After University Kirstin was found performing in the concert halls and recording studios of London, Europe and the world as classical soloist or principal cellist before settling in London, getting married and teaching in inner city schools.
Kirstin moved to France and Switzerland with her husband where she had her daughter and following this undertook an animal science degree. After being diagnosed with lobular breast cancer, Kirstin found switching her research interests from animals to humans a natural translational development. She began to realise how little was known about Invasive Lobular breast cancer and how many challenges having any breast cancer presented for patients and their families on so many levels.
Harbouring a passion for science and research, advocacy seamlessly integrated itself into Kirstin’s life. From her initial diagnosis, she avidly followed breast cancer research, attending conferences, reviewing research proposals and absorbing that information to inform work she does as patient advocate and later patient expert towards metastatic breast cancer drug approvals in the United Kingdom.
Having been directly impacted by issues such as inequality of available treatment and challenges to access drugs or trials, Kirstin has lived the struggle for which she negotiates on behalf of other breast cancer patients. She advocates for the Metastatic Breast Cancer Charity METUP UK www.metupuk.org (drugs and research advocate), the Lobular Moonshot Project www.lobularmoonshot.org, the Lobular Breast Cancer Alliance www.lbca.org (patient advocate), GRASP www.graspcancer.org (advocate mentor), METAvivor www.metavivor.org (patient reviewer) and every person afflicted by this infinitely heterogenous disease.
She is passionate about allowing science to alleviate fear, misunderstanding and unleash pragmatic negotiation to facilitate access to kinder, personalised breast cancer treatment pathways hoping to reduce the stress and improve both quality and length of lives for patients and their families. She finds that scientific research is an evolving adventure, providing her lots to think about and offering a never-ending golden thread of hope.
Betty Sanchez, NYC, U.S.A.
Grateful to be alive, an 8-years MBC thriver, and a dedicated cancer advocate since 2021. 😊
My cancer began December 2015 with an inflamed breast misdiagnosed as an insect bite. Inflammation growing and pain worsening daily, I searched for a MD with sensible answers. February 2016, fast tracked to Arymyxcin. March 2016: Biopsy and scan revealed de novo metastatic breast CANCER HER2+; the start of Taxol, Herceptin, Perjeta and horrendous side effects (neuropathy, burning skin, fatigue, brain fog), and; Acceptance of (forever) infusion treatments; EKGs, blood tests, and PET scans monitoring my metastatic disease. I shut down, I was frightened, I was “Giving up”. If I were to create a picture, I would paint an exhausted lady slumped in a chair.
It was after exhausting 5-years before gaining my level of normalcy and realizing my life would have been a disaster were it not for patient advocates and cancer organizations unending support that - empower, spread hopefulness, fellowship, and offer emotional support, educational updates of cancer drugs, treatments, patient-doctor collaborative decision-making tools from trustworthy sources, resources on nutrition, exercise, finances, self-care spas and beauty regiments that helped rebuild my confidence and strength contra cancer.
How do I give back the gifts and resources that helped me? Well, during my recovery, I was spending more time with my aging parents in Puerto Rico and a lot of time answering PR islanders’ questions about my cancer and my care. I was informed cancer resources and advocacy were relatively non-existent. Besides recognizing cancer is deadly and exhausting, as a Latina, a BC patient/survivor (and research analyst) I am well aware of health care disparities across the Hispanic/Latino communities.
SO, in 2021, I was accepted and happily started Living Beyond Breast Cancer Hear My Voice advocacy training program. In 2021, with my LBBC wings, I created, organize and facilitate neighborhood "cancer info/learning series” events in Dorado, Puerto Rico. I have had three, 2021, 2022, and May 2024 ZOOM/LIVE events and the next one is in May 2025. I recruit bi-lingual medical experts, scientists and advocates to speak about cancer to an audience that is predominantly Spanish-speaking. In 2023 I relocated to PR dedicated to expanding cancer advocacy here in PR and nationally, after 37 years in Princeton, NJ and previously a born/raised NYC girl 😊.
Besides keeping an eye on my mid-80s parents in PR 😊 I regularly enrich my advocacy skills with virtual programs, conferences and scholarship awarded training programs like: NBCC Project LEAD Advocacy (2024 graduate); SABCS Latina Cancer Advocacy (2024 graduate), SABCS Alamo Breast Cancer Advocacy (expected 2024 graduate), and Komen ambassador public policy programs (2023-present). I am thankful for the continued opportunity to tickle my science background as a Consumer Reviewr for DOD Congressionally Medical Research Programs, Grant Rviewer for METAvivor, and as a Patient Advocate voice for colleges/universities and pharma cancer research programs. Before advocacy, I was a Research/Data Analyst responsible for quality health metric analyses toward actionable ends. Prior that, in academic research in Neuroscience and Well-Being (Wet-lab and Clinical). I retired (i.e., deemed disabled) Oct. 2019.
When not advocating, I am swimming, cooking/sharing fresh organic meals, walking nature, travelling, or/and hanging out and creating stuff with my Lil’ grandchildren, 3 adult married children, and my adorable aging parents. I am not a doctor or therapist but feel free to reach out for fellowship, emotional support, conversations
Kristin Torres, Iowa, U.S.A.
Kristin, a National Breast Cancer Coalition Team Lead for the state of Iowa, is working with her local organization, The Beyond Pink TEAM. She works in Development and Higher Education and taught courses for Wartburg College's Institute for Leadership Education. She holds a BA in Theatre/Communications and an MA in Philanthropy and Nonprofit Development from the University of Northern Iowa. She is a graduate of the 2013 NBCC Project LEAD, Advanced LEAD, and has served as a Project LEAD Mentor for the past four classes. She has attended every NBCC Advocacy Summit and Lobby Day since 2013 and benefited directly from the DOD BCRP by receiving the drug Herceptin during her treatment in 2010 and 2011.