In this educational webinar, clinical expert Dr. Suzanne Fuqua, policy expert Jennifer Leib, and Dr. Kelly Shanahan, an advocate living with metastatic breast cancer, walk through how this testing works, what it can (and can’t) tell us, and how it’s being used across cancer types. We also talk about the real-world challenges—including gaps in insurance coverage and access—that can make it harder for people to benefit from these advances.

Following the speakers’ presentations, Cancer Nation CEO Shelley Fuld Nasso moderates a discussion that includes questions from the audience of patients, advocates, and professionals.

Watch the webinar below or here on YouTube.

Video Chapters and Resources

Webinar Chapters:

• 00:00 Introduction
• 02:07 What can this testing do currently?
• 05:14 Clinical & Research Background
• 10:05 Testing Styles & Continuing Research
• 15:47 Why blood-based testing matters for patients.
• 25:00 Policy Introduction
• 27:08 How Medicare determines coverage
• 31:23 Coverage Examples
• 35:46 CancerDx Access Alliance
• 37:57 Q&A: AI Use in Blood-Based Testing
• 40:07 What are the biggest benefits?
• 44:02 Research Funding Challenges
• 47:38 How can we advocate for coverage?
• 50:51 How do patients receive the results?
• 54:05 Are private insurers covering this?
• 55:32 How can patients ask to get this testing?

Webinar Slide Decks:

• Suzanne Fuqua, PhD: Understanding Blood-Based Testing in (Breast) Cancer Care (PDF)
• Jennifer Leib: Medicare Coverage of Precision Oncology Diagnostics (PDF)

This webinar is presented by Cancer Nation, and supported by an unrestricted educational grant from Guardant Health.

Suzanne A.W. Fuqua, PhD

Suzanne Fuqua is a Professor of Medicine and Molecular Biology at the Baylor University College of Medicine. The main goal of her research is to determine the role of specific somatic mutations in estrogen receptor alpha, called K303R and Y537N, in the clinical problem of hormone resistance. Dr. Fuqua was the first to discover alternatively spliced transcriptional isoforms and somatic mutations in breast tumors. She has determined that the K303R mutation alters many aspects of hormone action, including binding to co-regulatory proteins, enhanced stability, estrogen hypersensitivity, response to tamoxifen, and resistance to the aromatase inhibitor anastrozole. Her team discovered the Y537N mutation, a constitutionally active receptor in metastatic tumors. A major goal of her laboratory is to develop novel therapeutics to target these alterations in ER alpha to restore hormone sensitivity, as well as to identify other novel mechanisms of resistance.

Dr. Fuqua has bachelor’s and master’s degrees from the University of Houston. She received a PhD in Cancer Biology from the University of Texas Graduate School of Biomedical Science. She is a Professor of Medicine and Molecular and Cellular Biology at Baylor College of Medicine.

Kelly Shanahan, MD

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, 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 in 2013, on her 53rd birthday.

Neuropathy from the chemo cost her her career, but she has found a new purpose in advocacy. Kelly is the president of the board of directors of METAvivor; a member of the Patient Centered Dosing Initiative; a Komen Advocate in Science; on the symptom intervention committee of the Alliance for Clinical Trials in Oncology; on the emerging toxicities working group of MASCC; and is a grant reviewer and research advocate. Currently on her 6th line of therapy (and 2nd phase 1 clinical trial), she is passionate about getting patients to the table in the design, implementation, and follow up of clinical trials.

Kelly Shanahan is a mother, a wife, a daughter, a doctor, a woman LIVING with metastatic breast cancer.

Jennifer Leib, ScM, CGC

Jennifer Leib founded Innovation Policy Solutions, a government relations firm specializing in genomics and precision medicine policy. Some of her accomplishments include leading the advocacy effort in support of the plaintiffs in the Supreme Court’s unanimous decision in the Association for Molecular Pathology vs. Myriad Genetics Inc. that invalidated gene patents, serving on the Executive Committee of the Coalition for Genetic Fairness which successfully advocated for passage of the Genetic Information Nondiscrimination Act, and assisting companies with navigating the evolving regulatory and reimbursement landscape for diagnostic testing during recent public health emergencies. Previously, Jennifer co-founded another consulting firm, HealthFutures, which was acquired by CRD Associates in 2009. Board certified in genetic counseling, she also worked at the National Institutes of Health, the Senate Committee on Health, Education, Labor and Pensions, and in the biotechnology industry.

The post Webinar – Understanding Blood-Based Testing in Cancer Care appeared first on Cancer Nation (Formerly NCCS).

Susan (Susie) Leigh, BSN, RN-Retired — one of the founding members of Cancer Nation, a five-time cancer survivor, and one of the most influential voices in the history of the cancer survivorship movement has passed away. We are heartbroken, and we are deeply grateful.

Susie did not simply witness the birth of the cancer survivorship movement. She helped build it. In 1986, she joined a small group of determined survivors and allies in Albuquerque, New Mexico, to create the National Coalition for Cancer Survivorship  (now Cancer Nation). Early on, they successfully fought to change the cancer vocabulary from “victim” to “survivor,” and coordinated a network of local and regional groups to distribute resources and build community at a time when cancer was a taboo subject. Susie served as Secretary and later President of the Board of Directors, shaped the Cancer Survival Toolbox^®, and spent decades making sure that survivors were not just spoken about, but heard.

Susie Leigh during her time as NCCS President.

Diagnosed with Hodgkin lymphoma in 1972 at age 24, shortly after returning home from serving as an Army nurse in Vietnam, Susie Leigh found her calling. Her diagnosis drew her toward oncology nursing, and into a career devoted to caring for people living with and beyond cancer. She would go on to survive breast, bladder, and lung cancers as well, each a late effect of her original treatment.

Susie understood cancer from both sides of the bedside. As a survivor, she knew firsthand what happened after treatment ended, and how little attention the system paid to the quality of the life that followed. That experience was the foundation of her advocacy. As she said, “It’s not enough to survive cancer. We also need to address the quality of life after treatment, including possible risk factors for future problems.”

For Susie, that conviction shaped everything. She served on national committees at the National Cancer Institute, the Oncology Nursing Society, and other leading institutions. She introduced survivorship to international audiences in seven countries. She sat on steering committees, mentored advocates, and gave her time to the people who came after her. She served as a member of the Cancer Nation Advocates Steering Committee and a mentor for the Cancer Nation Leadership Academy. She also served as a board member of Hodgkins International.

Susie (center) with seven other co-founding members at the 1996 NCCS National Assembly.

Susie Leigh (center) receives the Stovall Award from Board Members Dr. Ana María Lopez and Dr. Julia Rowland.

Most recently, Susie was honored at Cancer Nation’s Igniting Hope Awards Reception on June 26, 2025, in Washington, DC, where she received the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care, a national award recognizing individuals who have made a lasting impact on patient-centered cancer care.

Ellen and Susie were dear friends, so it was fitting for Susie to receive the award. Many of Susie’s friends from her long career in advocacy came to celebrate her. She said afterward that it was a highlight of her life to receive the award and spend time with so many friends.

Susie at NCCS’s THE MARCH in Washington, DC, 1998.

We encourage you to read more about Susie’s extraordinary life and legacy:

• Susie Leigh — Founding a Movement, Shaping the Future — A blog post about her lifetime of accomplishments.
• Bestselling author Judith L. Pearson interviewed Susie extensively for her book about the cancer survivorship movement, From Shadows to Life. Read more about the book and watch a conversation with Susie.
• 2025 Ellen L. Stovall Award Announcement
• Igniting Hope Awards Reception
• Susie was featured in USA Today in 2019: “Life after cancer: More survivors live longer, face new health challenges.”

Susie believed that every survivor has a story, and that every story matters. She spent more than five decades making sure those stories were heard at every level of the health care system in nursing journals, on national committees, at congressional hearings, and in the hearts of the advocates she mentored.

We carry her forward in our hearts and our work every day to demand a cure for care.

The post Remembering Susie Leigh: A Founder, a Force, and a Friend appeared first on Cancer Nation (Formerly NCCS).

After her gallbladder was removed, the abdominal pain didn’t go away. It got worse. She started losing weight. Finally, a GI specialist at the Mayo Clinic in Rochester ordered a series of tests, and it was a chest X-ray that finally showed something: a large mass. A CT scan and biopsy confirmed it. Jessie was diagnosed with nodular sclerosing Hodgkin lymphoma, stage 3a.

Jessie’s Story

She began six months of ABVD chemotherapy, every two weeks. Chemotherapy is hard to describe to someone who hasn’t been through it, and Jessie doesn’t soften it. By month four, the cumulative weight of treatment, the physical toll, the uncertainty, the isolation, had become almost unbearable. She reached a point where she didn’t know what she wanted, only that she wanted it to stop. She has described wanting to quit chemotherapy, and something beyond that, a desire for the whole situation to simply cease.

In that moment, she made a deal with herself. If she finished treatment, she would go back to school to become a physician. She wanted to understand the system that had failed her, and to become the kind of physician who would actually listen.

Chemotherapy was followed by three weeks of radiation. The cancer shrank.

And then she kept her promise.

Medical school was its own undertaking: years of training, residency, the long process of becoming the kind of physician she had needed and hadn’t found. She spent seven years working within a large health care system, and another year and a half at a community health center. Inside that larger system, she tried to build what she knew survivors needed: a survivorship-focused primary care clinic. She ran into too many obstacles to make it happen.

So she built her own practice instead, in North Dakota, from the ground up. She is the doctor and the billing manager, the employer and the administrator, the person who makes the whole thing run. Solo practice ownership is its own endurance test, and she has been passing it while also raising a family and building a nonprofit.

She did all of that. She also never forgot what it felt like to be the patient in the room who wasn’t being heard.

The Turning Point

About ten years after treatment, her oncologist formally discharged her from care. And that’s when another kind of difficulty began. There was no survivorship program. No plan for what came next. No one to tell her which long-term effects to watch for, which screenings to prioritize, or how to explain any of it to her primary care doctor. She was either going to figure it out herself, or teach her own physicians as she went.

Jessie was a doctor by then. She understood medicine. And she was still lost. That is the thing about survivorship care in this country: knowing how the system works does not protect you from the gaps in it.

“The way I was feeling was OK, and it was normal. I had so many emotions during chemotherapy that weren’t really dealt with.”

That is what she wishes someone had told her at 28. It is also the message she now carries into her practice, her advocacy, and the survivorship education she is building for her state.

The Advocacy Work

Jessie serves as an ambassador with Cancer Nation’s Leadership Academy, and she is channeling what she lived through into something concrete.

She founded the North Dakota Cancer Survivorship Foundation, with a vision to create a community survivorship center that brings together primary care, physical and occupational therapy, mental health services, and financial support under one roof. She is currently pursuing grant funding to bring survivorship education to North Dakotans statewide.

Her work connects directly to Cancer Nation’s core policy priorities. She lives the gap in Survivorship Care Plans every day: as a physician who was herself discharged from oncology without a plan, and as a primary care doctor whose cancer survivor patients arrive without one. She understands Whole Person Cancer Care not as a policy abstraction but as the thing that was missing from her own treatment, the emotional support, the honest conversations, the acknowledgment that surviving is its own medical and human challenge.

She is equally plain about what needs to change structurally. As a solo practice owner in a rural state, she sees the collision of survivorship and inadequate insurance coverage every day, and the impact it has on her patients and on herself. Her position on it is unambiguous: “Health insurance should be a utility.”

What’s Next

Jessie’s advocacy is, by her own account, still becoming, but the foundation under all of it is something she earned slowly, over 23 years of survivorship, of practicing medicine, of watching patients arrive without care plans and leave without enough support. The survivorship center is not yet built. The grant is not yet funded. But the foundation is there, rooted in a specific kind of knowing that only comes from having been the survivor who needed what didn’t exist.

What she wants other survivors to know is not complicated: what you are feeling is normal. It is correct. Whatever it is. And there are people working to make sure you don’t have to find that out alone.

Want to get involved in cancer advocacy?

Learn more about Cancer Nation Advocates and join for free. »

The post From Diagnosis to Doctor: When No One Was Listening, Jesse Lindemann, MD, Became the Doctor She Needed appeared first on Cancer Nation (Formerly NCCS).

Tremendous progress has been made in the fight against cancer, with new life-saving treatments available for many, earlier detection improving, and smoking rates declining.  That progress means that 18 million Americans are living with, through, and beyond cancer.  The Comprehensive Cancer Survivorship Act answers meets that moment with meaningful solutions, from coverage of care planning and complex cancer care coordination to employment assistance to a payment model that rewards quality survivorship care.

For 40 years, Cancer Nation has fought for a simple but powerful idea: cancer survivors deserve the chance not only to survive, but to thrive. This bill makes that possible, and we are proud to stand with Representatives Wasserman Schultz, Fitzpatrick, DeSaulnier, and Wilson in demanding it.

Cancer Nation also extends special appreciation to Representative Wasserman Schultz, herself a cancer survivor, for her extraordinary leadership and unwavering commitment to listening to survivors, elevating their voices, and advancing solutions that reflect the realities of life after cancer.

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The post Cancer Nation Applauds the Introduction of the Lainie Jones Comprehensive Cancer Survivorship Act appeared first on Cancer Nation (Formerly NCCS).

We’re changing the name — and expanding the mission.

This is more than just a new name; It’s how we drive change.

For years, Elevating Survivorship brought advocates together to turn lived experience into community-based action. We trained and mentored Elevate Ambassadors and supported their community projects.

What we knew to be true was confirmed again and again:

The health care system won’t change unless all of us — survivors, caregivers, and health care professionals — come together to demand something better.

That’s why the Cancer Nation Leadership Academy needs to exist. We’re building a network of leaders across communities and care settings who are ready to fix what’s broken.

Cancer Nation Ambassadors will drive change through:

• Cross-community leadership
  Survivors, caregivers, and health care professionals learning and leading side-by-side.
• Collective action
  Not just ideas, but the tools to change care in clinics, communities, and policy.
• Real transformation
  Confidence, connection, and shared power to lead change.

What’s New?

The Cancer Nation Leadership Academy builds on everything we learned from Elevating Survivorship and expands it into something bigger.

The Leadership Academy:

• Trains leaders in advocacy and systems change.
• Builds a shared language between lived experience and clinical care.
• Equips our community to push for better policy and better care.
• Launches projects that move us closer to a Cure for Care.

This is where Cancer Nation Ambassadors become catalysts for change to reshape care.

The 2025 class of Cancer Nation Ambassadors and staff at an in-person training.

Interested in becoming a Cancer Nation Ambassador?

We’re opening the doors to the next generation of leaders — survivors, caregivers, and health care professionals ready to turn lived experience into action — because this is how we get closer to a Cure for Care.

We’ll soon open 2026 Cancer Nation Leadership Academy applications. Subscribe to Cancer Nation updates to be the first to hear about it.

Learn more about the Leadership Academy and see how Cancer Nation Ambassadors are making a difference in their communities.

We are Cancer Nation. And we are here to be heard.

The post Introducing The Cancer Nation Leadership Academy appeared first on Cancer Nation (Formerly NCCS).

Advocate Spotlight: Tom Warren

In January 2019, Tom Warren’s life changed in a matter of weeks.

At 63, he was still working, still planning for the years ahead. Then a small mark on the side of his nose, first noticed by his spouse, Janet, led to a diagnosis that would upend everything: angiosarcoma, a rare and aggressive cancer with an average survival rate of just three years.

Within days of his diagnosis, his care moved at a pace few are prepared for. What followed wasn’t a single moment of crisis. It was years of treatment, recovery, and adaptation. By the end of that month, he underwent a 12-hour surgery to remove a five-centimeter tumor and begin reconstructing his face. Then, nearly 30 rounds of chemotherapy, 50 rounds of proton therapy, and multiple surgeries to address complications.

And in 2022, the loss of his left eye.

Today, Tom has no evidence of disease. “I’m a cancer survivor, something that, statistically, I was never expected to say six years after my diagnosis,” Tom shares. But as so many in our community know, survivorship is not a finish line, but a new reality, and one that brings its own set of challenges, questions, and unknowns.

“When you outlive your prognosis, you enter a space with few roadmaps,” he said. “The long-term effects of treatment don’t disappear; in many ways, they become part of your daily life.”

Tom knows that reality firsthand, living with lasting side effects from treatment, like fibrosis, neuropathy, and something harder to measure: the loss of identity. Tom shared that changes to his appearance mean people don’t always recognize him, and the career he once held, and the purpose it gave him, is no longer part of his daily life.

And yet, his story is not defined by what was lost. It is shaped by what came next.

Finding Purpose in the Aftermath

For Tom, survivorship became not just something to navigate, but something to make sense of.

He credits his spouse, children, grandchildren, friends, and community as essential to getting through the hardest moments. Meals showed up. Rides were arranged. People sat with him when there wasn’t anything to fix. It was steady, everyday support, the kind that carries you when you don’t have much left to give.

That experience stayed with him. Not just the care he received, but what it meant to be supported in a moment when everything had changed.

“That experience led me into advocacy,” he said. “Which has been a journey, one where I am still finding my footing.”

Tom began with A Fresh Chapter, first as a participant learning to advocate for himself, and later mentoring others in the program. It was a shift into the role of advocate, not all at once, but enough to open a door.

“That experience helped me feel valued again at a time when I was searching for a renewed sense of purpose.” Advocacy didn’t arrive as a clear role or identity. It built over time, through conversation, through connection, through showing up for others who were trying to find their way, too.

A Place to Be Heard

Through that community, Tom was introduced to Cancer Nation.

What started as a connection became an opportunity to share his story, to speak on behalf of other survivors, and to step into a new kind of leadership.

“Shelley and her team are doing meaningful, impactful work, and they’ve given me a space to begin building a new identity,” he shared.

While Tom is quick to say he’s still figuring out where he fits, his presence reflects something deeper about what advocacy really is and who it belongs to.

“The advocacy space includes many highly credentialed individuals from fields like law, medicine, insurance, and education,” he said. “My background is as a business leader, and I’m working to understand how I can best use that experience to serve the community I’m now part of.”

Tom Warren talks with Cancer Nation CEO Shelley Fuld Nasso at the Fall 2025 Cancer Nation Policy Roundtable (Photo by Leslie Kossoff/LK Photos)

Defining Advocacy

Ask Tom what advocacy means, and his answer doesn’t start with policy. It starts with the individual.

“Advocacy begins with supporting yourself; learning to speak up, ask questions, and take an active role in your care,” he said.

From there, it grows.

It becomes sharing knowledge. Supporting others. Helping someone else feel less alone in a system that often leaves people to figure things out on their own.

This matters. Because we know from our 2025 Survivorship Survey that too many survivors are navigating care without the support they need—emotionally, financially, and practically. Many feel unprepared for what comes after treatment. Many are still searching for answers.

Tom’s perspective speaks directly to that gap.

“What we learn and what we share matters,” he said. “It has the power to help those who come after us, people who will need guidance, understanding, and a voice.”

This is how change happens. Not just through systems, but through people willing to show up and speak.

Tom’s story is a reminder that advocacy is not reserved for experts. It is built by people with lived experience—people willing to turn what they’ve been through into something that helps others.

“Anyone who has been on the cancer path has something valuable to offer,” he said.

And for those shaping policy and care systems, his message is just as clear: listen.

“At the center of this work is something essential: listening to patients,” Tom shared. “Hearing directly from those who have lived through cancer is critical to shaping what comes next and ensuring that advocacy efforts truly reflect the needs of the community.”

We couldn’t agree more.

Because a cure for care doesn’t happen in theory. It happens when real experiences shape real decisions, and when the voices of survivors are not just included but prioritized.

Living Forward

Today, Tom’s life looks different than he once imagined.

He spends his time fishing, golfing, hiking, and most importantly, being present with his family.

There is joy in that. There is meaning in that.

But there is also something else: a recognition that survivorship is not the end of the story.

“I may be an outlier in terms of survival,” he said, “but my experience highlights something universal: surviving cancer is not the end of the story. It is the beginning of a new one, one that requires resilience, adaptation, and, above all, connection.”

Want to get involved in cancer advocacy?

Learn more about Cancer Nation Advocates and join for free. »

The post Outliving the Odds, Rewriting the Path: Tom Warren’s Story of Survivorship and Advocacy appeared first on Cancer Nation (Formerly NCCS).

Dr. Graff, Director of Clinical Research at Mission Cancer and Blood in Iowa, breaks down common symptoms and side effects, how treatment may feel day to day, and how to communicate clearly and confidently with your care team. She also discusses what survivorship may look like after treatment and what questions patients and caregivers may want to ask along the way.

Following Dr. Graff’s presentation, Cancer Nation CEO Shelley Fuld Nasso moderates a Q&A session that includes questions from the webinar audience of patients, advocates, and professionals.

Watch the webinar below or here on YouTube.

Video Chapters and Resources

Webinar Chapters:

• 00:00 Introducing Dr. Tara Graff
• 01:39 Why this topic matters
• 03:21 What are Bispecific Antibodies? When are they used?
• 05:02 Bispecifics in Lymphoma & Myeloma
• 09:47 Patient Clinical Journey, Consensus Guidelines
• 14:29 Reported Side Effects, Toxicities
• 18:37 Clinical Side Effect Mitigation
• 21:24 What patients & caregivers can expect, common questions
• 27:36 Infection Risk, Late Toxicity
• 29:20 Resources & Education for Patients
• 31:00 Q&A
• 31:43 Providing Bispecifics in communities vs. cancer centers
• 37:26 What are the responsibilities for caregivers?
• 41:06 Bispecifics Clinical Trials of other cancer types
• 42:39 Survival rate discussion
• 45:05 Where do bispecifics fit among other treatment options?
• 48:54 How do you monitor for side effects?
• 53:29 How do your patients compare this treatment with others?

Related Resources:

• Webinar Slide Deck: Bispecific Antibodies in Cancer Care
• From the journal Blood: Consensus recommendations on the management of toxicity associated with CD3×CD20 bispecific antibody therapy (co-written by Dr. Graff)
• Blood Cancer United (LLS): www.bloodcancerunited.org
• Lymphoma Research Foundation: www.lymphoma.org
• International Myeloma Foundation: www.myeloma.org
• CancerCare: www.cancercare.org
• National Cancer Institute: www.cancer.gov

This webinar is presented by Cancer Nation, and supported by an unrestricted educational grant from Genmab.

About Tara Graff, DO, MS

Tara M. Graff, DO, MS, first earned a master’s degree in Immunology from Loyola University Chicago. After medical school and residency training, she completed her fellowship in Hematology and Oncology at the Medical College of Wisconsin.

For over a decade, she has served patients at Mission Cancer and Blood in Des Moines, Iowa, where she specializes in CLL and NHL. She leads as Director of Clinical Research, playing a integral role in developing the joint clinical trial program with the University of Iowa.

Nationally, Dr. Graff contributes her expertise through multiple leadership positions. She serves on the National Lymphoma Advisory Boards, NHL Advisory Council, LBCL Steering Committee, ECOG’s Clinical Trial Organization, and the CIBMTR Lymphoma Working Committee, and also works with the Lymphoma Research Foundation. She partners with the Leukemia & Lymphoma Society to expand education for rural cancer patients and to train community oncologists on CAR-T and bispecific therapies.

As Principal Investigator on numerous clinical trials and author of many peer-reviewed publications, Dr. Graff has helped advanced care for patients with lymphoma. She is also the Executive Director of the Cellular Therapy Program at Exigent Research, where she chairs the Malignant Hematology Council. Through Exigent and her own initiatives, she has helped operationalize bispecifics across more than 20 community sites nationwide.

The post Webinar – Bispecific Antibodies in Cancer Care: What to Know, What to Expect appeared first on Cancer Nation (Formerly NCCS).

Diagnosed with Hodgkin’s lymphoma at age 15, Erin lived more than 50 years with and beyond cancer. The treatments that saved her life as a teenager also shaped the rest of it — thyroid cancer, heart surgery, lung disease, infertility, and ultimately stomach cancer. She carried the long arc of survivorship in her own body.

Erin understood surviving cancer is not the end of the story. It is the beginning of a lifelong relationship with our health, our uncertainty, and a health care system that too often isn’t built for the long haul. Instead of shrinking from that reality, Erin stepped into it.

Erin founded Hodgkin’s International so long-term survivors wouldn’t feel alone navigating late effects. When she joined the inaugural cohort of Cancer Nation Ambassadors, she joined because she believed survivors are stronger together. She often said Cancer Nation’s Elevate program helped her sharpen her voice and expand her reach, and she used that momentum to take Hodgkin’s International to the next level.

She brought survivors and clinicians into the same room. She showed up on Capitol Hill. She spoke with clarity and conviction about better coordination, survivorship planning, and real financial protections. She believed survivors deserve more than gratitude, that we deserve care that sees the whole person.

Erin meets with Rep. Mark DeSaulnier, the Co-Chair of the Congressional Cancer Survivors Caucus during a Cancer Nation Hill Day.

“Erin left an indelible footprint on the cancer advocacy community,” said Cancer Nation CEO Shelley Fuld Nasso. “With more than 50 years of survivorship, she was a passionate advocate for helping cancer survivors live well after their cancer diagnosis, and she helped and inspired so many people.”

“We as survivors strive to build a legacy and create meaning out of hardship,” said Veronika Panagiotou, Cancer Nation Director of Advocacy & Programs. “We hope that it will change the cancer community while we are here and it will allow us to be remembered when we are gone. Erin built a legacy through Hodgkin’s International that will continue to change the trajectory of cancer care for years to come. Her passion is alive in us and we will keep her memory alive by serving others in her honor.”

Erin ran marathons. She raised funds for pediatric cancer research. She poured her heart into motherhood. She walked by the ocean. She painted. She listened. She made people feel seen.

Even in the face of unimaginable health challenges, Erin chose connection. She chose advocacy.

Erin once said that advocacy gave her voice. The truth is she gave voice to countless others.

Cancer Nation is grieving with Erin’s family and with the global community she built. We grieve as friends. As partners. As fellow survivors.

Erin helped build this movement. We will carry it forward.

# # #

A public memorial will be held to honor Erin’s life. Details will be announced at this link. Loved ones can also submit a remembrance of Erin here.

Read more about Erin’s life and work in our previously published Advocate Spotlight, “Erin Cummings’s Journey as a Long-Term Hodgkin’s Lymphoma Survivor.”

The Vineyard Gazette published an obituary for Erin here.

Learn more about Hodgkin’s International at hodgkinsinternational.com.

Erin with her family

The post Remembering Erin Cummings, A Passionate Advocate for Survivors and Founder of Hodgkin’s International appeared first on Cancer Nation (Formerly NCCS).

Advocate Spotlight: Daria Ross

At 47 years old, Daria Ross was living her dream in New York City when a quiet moment on her couch changed everything. It was October, Breast Cancer Awareness Month, when she felt a lump during a self-exam. Within weeks, she was diagnosed with Stage 2, Grade 3, triple negative breast cancer.
Daria did not waste time.

She made the decision to move back home to Michigan for a second opinion and to undergo treatment surrounded by her family. What followed was a grueling year: multiple surgeries, chemotherapy, radiation, and the emotional whiplash of navigating a life-threatening diagnosis while trying to make informed decisions quickly.

After her surgery, she remembers, between 15 and 20 family members filled the waiting room, refusing to let her face the moment alone. And when members of her care team made her feel unseen or unheard, she made the difficult decision to change providers, trusting her instincts even when fear was loud.

When she thinks back on those times, Daria shares that even in the uncertainty, one thing was clear: She wasn’t going to be passive in her care. “I trusted my instincts when something didn’t feel right,” she says. “Even when I was afraid.”

Her instinct to speak up, to ask questions, and to seek better care would eventually shape not just her survivorship, but the purpose that emerged from the experience.

Today, Daria is the founder of a public health-driven consulting practice, a patient education and advocacy strategist, and a Patient & Community Impact Advocate providing peer support, grant development, and community-centered advocacy services for nonprofits and mission-driven organizations. She is also seven years into survivorship, and focused on protecting her peace while amplifying her voice and the voices of others whose experiences deserve to shape the policies that affect them.

When Advocacy Finds You

Daria will tell you that advocacy found her before she ever claimed the title.

During treatment, people began reaching out, asking what she was learning through the experience and how she was navigating decisions. She shared what she knew, helping others by translating medical jargon into plain language and offering reassurance.

It didn’t take long for her to realize there was a gap. “There was a real gap in patient understanding and support,” she says. “I couldn’t keep what I had learned to myself.”

That realization pushed her further. She pursued a graduate degree in public health to deepen her knowledge and expand her impact. She became an ambassador and advocate across multiple organizations, including serving as a VOICES of Black Women Ambassador, volunteering with her local ACS/Making Strides Leadership Team, and becoming an ANGEL Advocate with the Tigerlily Foundation.

Daria’s advocacy spans community outreach, peer support, and policy engagement at the local, state, and national levels. She has advocated on Capitol Hill. She has sat in rooms where decisions are made and shared what those decisions look like in real life, in hospital rooms, in waiting rooms, and in family kitchens.

For Daria, advocacy isn’t theoretical. It’s personal.

As a Black woman diagnosed with an aggressive subtype of breast cancer, she began asking hard questions about why disparities in diagnosis, access, and outcomes persist. She remembers moments of unclear communication. The frustration of pandemic-related delays in reconstructive surgery. The weight of navigating overwhelming information while making life-altering decisions in real time.

Those experiences didn’t just stay with her, they shaped her voice and how she uses it.

Finding Her Voice with Cancer Nation

Daria’s connection to Cancer Nation began in 2022, when a fellow survivor encouraged her to apply to what was then the NCCS Elevate Ambassador Program.

She said yes, and that yes changed everything.

As a 2022 Elevate Ambassador, Daria found herself in a community that centered around survivorship, not just treatment. She participated in workshops, connected with fellow advocates, and gained hands-on experience engaging with policymakers. In 2023, she served as a panelist at the Virtual CPAT Symposium on “Elevate Survivorship: Exploring Community Survivorship Programs.”

Daria (3rd from the right) at a training with some of her fellow 2022 Cancer Nation Ambassadors.

Through Cancer Nation, Daria says she strengthened her ability to translate lived experience into policy conversations. She learned how survivorship care plans can transform post-treatment confidence. She saw how collective storytelling can move legislators. And, she discovered that when survivors gather, not just to share pain, but to demand better care, change becomes possible.

“Speaking with legislators and sharing my story has strengthened my advocacy and renewed my energy,” she says. “I bring everything I learn back to my community.”

That ripple effect is how movements grow.

“Do It Afraid.” Daria’s Advice to Other Advocates

Ask Daria how she defines advocacy, and she does not hesitate.

“Advocacy saves lives,” she says. “When patients speak up, systems listen.”

To her, advocacy is turning lived experience into action. It is ensuring policies reflect real people and real needs. It is moving from surviving to shaping what comes next.

But she is also honest about the emotional weight. Advocacy means carrying stories, your own and others’. It means confronting systems that do not change overnight. It requires rest, faith, and intention.

As she enters seven years of survivorship, she is clear about one thing: protecting her peace allows her to serve sustainably.

Her advice to others who are considering getting involved in advocacy? “Say yes and step in. Do it afraid. You don’t need to have all the answers.”

Daria Ross chose to use her voice, even when it felt scary, and because she did, her community is stronger. Her voice echoes in legislative offices, and her presence reminds newly diagnosed patients that they are not alone.

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The post Faith, Family, and the Power of Saying Yes: Daria Ross on Turning Survivorship Into Action appeared first on Cancer Nation (Formerly NCCS).

At its core, Cancer Nation Advocates focuses on the real issues that affect quality of care for people living with, through, and beyond cancer. Together, we advance Cancer Nation’s fight for whole person cancer care, survivorship care plans, and financial protections. The program transforms lived experience into collective action, ensuring that the voices of those most impacted are heard where decisions are made.

Guided by a dedicated steering committee, Cancer Nation Advocates equips the cancer community with the tools, training, and confidence needed to speak up for better care. The program builds on what participants already know from their own lives and helps them use that knowledge to push for policies that meet real needs.

Cancer Nation Advocates offers multiple ways to get involved and stay connected. Through webinars, an online community, and in‑person events, participants can learn, share, and take action on the issues, programs, and policies shaping Cancer Nation.

Cancer Nation Advocates is more than a program, it’s a movement powered by people who believe cancer care can and should be better.

If you’re ready to make a difference for people living with cancer today and for those who will come after us — join Cancer Nation Advocates. Your voice matters here.

The post Introducing Cancer Nation Advocates: Turning Lived Experience Into Lasting Change appeared first on Cancer Nation (Formerly NCCS).