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.

Want to get involved in cancer advocacy?

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

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).

A Life Shaped by Experience, Research, and the Need for Better Care

Brandon Hertzendorf’s path to advocacy sits at the intersection of lived experience, research, and a deep belief that cancer care can and must be better. Born and raised in South Florida, Brandon describes his childhood as fairly typical. That changed during high school, when a series of unexplained symptoms slowly revealed something far more serious. What followed shaped not only his life, but the work he now feels called to do.

Today, Brandon works in Washington, DC at the National Institutes of Health, conducting social and behavioral health research. He holds a bachelor’s degree in psychology from the University of Florida and is on the path to becoming a psycho-oncologist. His story reflects why research and whole person care matter.

When Symptoms Became Something More

Brandon’s connection to cancer began long before he had the language to describe it. Migraines that once came monthly became constant. He began losing hearing in his left ear. A trip to the emergency room set off a chain reaction of scans, opinions, and diagnoses. What doctors initially believed was a benign tumor turned out to be something far rarer: a skull-based chondrosarcoma. Brandon was just 15 years old.

The rarity of his diagnosis placed Brandon in unfamiliar territory. He was treated in adult hospitals and navigating decisions that even seasoned clinicians debated. One doctor described him as a “unicorn of unicorns,” underscoring just how uncommon his case was. Ultimately, Brandon underwent a 17-hour surgery at the University of Miami, followed by 35 rounds of proton and photon beam radiation at Massachusetts General Hospital.

Navigating a System Without a Playbook

Brandon, age 15, “rings the bell” after finishing treatment.

What stands out most when Brandon reflects on that period is how overwhelming cancer care can be. “Cancer care is like a game,” he says, “not because it’s trivial, but because the rules are unclear, the stakes are high, and every decision can change the outcome.” Each specialist offered a different perspective. Treatment timelines shifted. Risks were weighed without certainty. His family responded the only way they could: by becoming expert organizers of information by carrying binders filled with records, medications, and notes.

From Patient to Researcher

That experience planted the seeds for Brandon’s future work. As a psychology student, and later through pediatric asthma research, he became increasingly interested in health psychology, specifically how people with chronic illness navigate complex systems and cope with long-term effects. Cancer, he learned, doesn’t end when treatment does. Survivorship brings its own challenges, many of which go unaddressed. While Brandon is grateful for the medical care that saved his life, he is clear about what was missing. Psychosocial support was inconsistent. The emotional weight of treatment, especially for a teenager, was largely unaddressed. And while he didn’t fully understand the financial toll at the time, he knew the burden on his family was significant.

Why Advocacy Became Personal

For Brandon, advocacy became inevitable. During his treatment, his mother turned to online support groups to gather information and connect with other families facing similar diagnoses. Through those communities, Brandon saw just how uneven cancer care can be like how geography, access, and resources can make the journey easier for some and far harder for others. Equity, he realized, wasn’t abstract. It was personal.

Moving to Washington, DC sharpened that realization. Being in the nation’s capital made the connection between policy and care impossible to ignore. “Why not put my best foot forward?” he thought. Advocacy wasn’t just something he wanted to do, it felt like something he was meant to do.

Finding a Home at Cancer Nation and Discovering the Power of Collective Voice

Brandon’s introduction to Cancer Nation came through his professional network, but the alignment was immediate. Cancer survivorship, policy, and research, three threads that had shaped his life, came together in one place. Cancer Nation became a natural home.

Through Cancer Nation, Brandon has participated in webinars, community conversations, and the 2025 Cancer Policy and Advocacy Team Symposium. For him, the experience went beyond learning policy details. Standing on Capitol Hill and sharing stories, his own and those of others, shifted how he saw himself.

“I didn’t realize how powerful a story could be,” Brandon says. Speaking out loud about an experience he had long normalized helped him see his own strength. Being surrounded by others who understood, even if their diagnoses were different, created a sense of connection he hadn’t felt before.

Research Saved His Life—and Advocacy Keeps It Moving Forward

That collective power is what Brandon believes makes advocacy effective. And when it comes to cancer research, the impact is undeniable. Treatments for skull-based chondrosarcoma have improved dramatically in the last 15 years because of sustained research and innovation. Brandon is direct about what that means: had he been diagnosed a decade earlier, his outcome might have been very different.

That reality is what he carried with him to meetings with lawmakers. Cancer research funding isn’t theoretical—it saves lives. It improves outcomes. It gives people a future. Cutting funding, Brandon argues, isn’t just a budget decision. It’s a decision that shapes who gets to survive and how well.

Using Our Voices to Shape Better Care

Brandon’s advocacy closely aligns with Cancer Nation’s policy priorities, reflecting a shared belief that better policy leads to better cancer care. Follow-up care, preventive services, and coordinated survivorship plans are too often overlooked once treatment ends. Yet long-term side effects, mental health needs, and chronic conditions remain. Survivors deserve care that doesn’t disappear when treatment does.

When Brandon talks about advocacy, he doesn’t frame it as expertise reserved for a few. Advocacy, to him, is speaking honestly about what you’ve seen and experienced and refusing to stay silent when systems fall short. It’s leaving your comfort zone and trusting that your voice matters.

His message to policymakers is simple: listen to patients. People living with, through, and beyond cancer understand the system in ways no report ever could. Their experiences should guide decisions about research funding, care delivery, and survivorship policy.

The Care We Deserve and the Power to Demand It

Brandon sees himself as one voice among many and together, those voices are powerful. “Cancer Nation brings people with different backgrounds and stories together around a shared demand: better care,” he says. Care that sees the whole person. Care that lasts beyond treatment. Care grounded in research and shaped by lived experience.

“We are Cancer Nation. And we are here to be heard,” Brandon says. For him, those words are a call to action. Be loud. Be persistent. And never stop pushing for the research, policies, and care that makes survival and thriving possible.

Learn more about Cancer Nation’s CPAT program for advocates and join for free.

The post Research Made Survival Possible: Brandon Hertzendorf on Turning Experience into Advocacy appeared first on Cancer Nation (Formerly NCCS).

Photo Credit: Lauren Tabak

Laurel Braitman has spent her life at the intersection of story, healing, and human connection. As a writer, teacher, and the Director of Writing and Storytelling at the Stanford School of Medicine, she helps medical students, clinicians, and future health leaders learn how to speak to patients and families with clarity and compassion; not with jargon, but with humanity. She teaches them that communication is not an accessory to care. It is care. And it’s a lesson she learned long before she ever stepped into a classroom.

Cancer entered Laurel’s story early. Her father was ill from the time she was three until she was seventeen, and this reality shaped her childhood in ways most kids never have to imagine. In her memoir, What Looks Like Bravery, Laurel writes about those years with unforgettable clarity: the memories of growing up in the long shadow of cancer, the skills he raced to teach her before he died, and the complicated legacy of strength and perfectionism his loss left behind. Later in life, she would witness her stepfather’s experience with bladder cancer and, shortly after losing him to cancer, support her mother through metastatic pancreatic cancer.

Across those seasons of her life, the roles changed; daughter, caregiver, witness, co-survivor, but the emotional terrain was often familiar: the uncertainty of each day, the quiet calculations about what care choices to make, the constant questioning of whether she was doing enough, and the ache of anticipatory grief.

Laurel describes caregiving not as a single act, but as a landscape. She questions, “What’s going to happen today? Are they okay? Am I doing enough? Is this the right choice?”

And woven through that anxiety was something deeper, undeniable life lessons and an unexpected spiritual clarity.

Walking her mother “up to that final threshold and helping her step over it” was, Laurel told us, one of the most sacred experiences of her life.

These losses didn’t harden her; they expanded her. They shaped the way she listens, the way she shows up for others, and the way she understands what it means to care for a whole person, their fears, their hopes, and their unfinished stories.

With a beautiful certainty gained from her lived experience, Laurel knows every form of co-survivorship and caregiving carries weight, meaning, and a chance to grow. Laurel shares that caregiving is “an opportunity to show up for someone, even when it’s hard. These experiences made me who I am.”

NCCS/Cancer Nation hosts CPAT on Friday, June 27, 2025, in Washington, DC. (Photo by Leslie E. Kossoff/LK Photos)

Laurel joined Cancer Nation’s community in June 2025 to lead a writing workshop at the Cancer Policy and Advocacy Team Symposium. Her impact on attendees was palpable. Advocates later told us that her workshop was one of the most memorable parts of their experience. They carried her words home with them; lessons about allowing ourselves to speak truthfully, about honoring the lessons cancer carves into our lives, about finding meaning in what we wish we had never had to learn.

But Laurel didn’t just teach. She listened. She absorbed the stories of survivors, caregivers, and co-survivors who had endured life-altering moments and still chose to show up for others. Laurel was incredibly moved by the experience. “I was blown away by everyone,” she said. “Their generosity of spirit. Their resilience. It filled my cup, overflowing.”

The connection didn’t end in the workshop. Laurel also participated in her first Hill Day ever. She brought several of her medical students with her so they could learn what it means to practice advocacy as future health care professionals.

“To sit across from an elected official and speak openly about what survivors and caregivers need was powerful,” she told us. “Even when the outcomes weren’t what we hoped for, the act itself mattered.”

“It felt good to practice democracy,” Laurel said. “Especially now, when so many people don’t feel represented.”

Laurel Braitman and Cancer Nation CEO Shelley Fuld Nasso meet with a congressional office on Capitol Hill in June 2025 to advocate against cuts to Medicaid coverage.

Cancer Nation CEO Shelley Fuld Nasso recalls Laurels Hill Day experience fondly. “I had the privilege of accompanying Laurel to one of her Hill visits, where I saw her incredible communication and storytelling skills,” said Shelley. “One of my favorite experiences is witnessing the moment when someone sees the power of their voice as they share their story with elected officials, and I saw that fire ignited with Laurel.”

She and her students left changed, more awake to the human realities behind cancer care, and more committed to their future role in it.

To Laurel, advocacy is not something done only when convenient. “Advocacy is the belief that things can be better than they are, sometimes all evidence to the contrary, and you show up anyway.” And she knows from experience, when you’ve lived the gaps, the lack of communication, the financial strain, the care that treats symptoms but not people, you become unwilling to keep those lessons quiet.

Her message to policymakers: put people before politics. Laurel wants bipartisanship, not as a slogan, but as a lifeline.

From her perspective, American health and well-being “too often become a pawn in larger fights about power.” She emphasized that where you live should not determine whether you get quality care, and she underscored what every member of Cancer Nation knows too well: “no one should ever have to choose between medical treatment and keeping a roof overhead.”

Laurel embodies the spirit of our movement: bold, honest, survivor-centered, grounded in lived experience, and unwilling to accept a system that fails the people it’s meant to serve.

She is one of the 18 million whose stories are here to be heard. Laurel learned, instead of turning inward, to bravely face the fray; to teach, to advocate, to guide future clinicians, and to stand alongside our community as we demand a cure for care.

Find Laurel Online
LaurelBraitman.com – Laurel’s Website & Newsletter »
What Looks Like Bravery – Simon and Schuster »
@Laurel_Braitman on Instagram »

Learn more about Cancer Nation’s CPAT program for advocates and join for free.

The post The Meaning We Make: Laurel Braitman’s Path from Co-Survivor to Advocate appeared first on Cancer Nation (Formerly NCCS).

This year’s findings reveal erosion in trust and satisfaction in care, deepening financial and mental health burdens, and continued underuse of Survivorship Care Plans that could transform long-term outcomes.

New areas we explored in this year’s survey include:

• Management of chronic conditions along with cancer treatment.
• Confidence moving into post-treatment care.
• Deeper dive on Survivorship Care plans.
• Understanding the emotional toll of cancer care on mental health.
• Knowledge of Medicare prescription drug out-of-pocket caps and Medicare Prescription Payment Plan.
• Comfort with the implementation of AI in cancer care.

Cancer Nation CEO Shelley Fuld Nasso and Edge Research Senior Research Analyst Liana Gainsboro presented the 2025 survey findings in a web briefing on November 12.

Watch the full briefing below or watch it on YouTube.

Briefing Topic Chapters

Download the Survey Materials

Cancer Nation has made the full 2025 State of Survivorship Survey presentation slide deck (containing more slides than are featured in this briefing), along with the executive summary available for download.

Download the 2025 Survey Materials.

See our previous survey reports here.

About the Speakers

Shelley Fuld Nasso, MPP
As Chief Executive Officer, Shelley Fuld Nasso leads the public policy activities of NCCS at a time of rapid and fundamental health care system change. Prior to joining NCCS, Shelley served in leadership roles at Susan G. Komen, where she leveraged Komen’s grassroots network in Washington, D.C., and in state capitals. Shelley’s commitment to the work of NCCS is strongly tied to the experiences in the cancer care system of her dear friend, Dr. Brent Whitworth, a beloved physician who was diagnosed with stage IV cancer days before his 42nd birthday and who passed away 19 months later. Through Brent’s experiences, Shelley witnessed the strengths and flaws of the cancer care system and embraces the notion that policy change can make cancer care better for patients and caregivers.

Liana Gainsboro
Liana Gainsboro is a Senior Research Analyst at Edge Research, and since joining the team in 2019, has helped in the research design, implementation, and analysis of Cancer Nation’s Survivorship Survey. She has experience in both quantitative and qualitative studies, and is passionate about taking complex data and turning it into an understandable and compelling story. Liana frequently works on uncovering insights for health non-profits and patient advocacy organizations, including those focused on cancer patients, survivors, and caregivers. Liana has a Bachelor’s degree in Communication from College of Charleston. She is also a RIVA-certified moderator.

About Cancer Nation
Cancer Nation (formerly the National Coalition for Cancer Survivorship) is the nation’s oldest survivor-led cancer advocacy organization advocating for quality cancer care for all people touched by cancer. Established in 1986 by 23 leaders with expertise in cancer research, community-based support programs, cancer information services and cancer advocacy, Cancer Nation represents the more than 18.1 million Americans with a history of cancer by:

• Working with legislators and policy makers to improve cancer patient and survivor quality of care and quality of life after diagnosis,
• Advocating for changes in how our nation researches, regulates, finances, and delivers quality cancer care
• Empowering cancer survivors through publications and programs which provide tools for self-advocacy, and
• Convening other cancer organizations to address nationwide public policy issues affecting cancer survivors.

The post Cancer Nation Releases Survivorship Survey 2025 Results appeared first on Cancer Nation (Formerly NCCS).

Cancer Nation – formerly the National Coalition for Cancer Survivorship – has had the pleasure of Dr. Pazdur’s acquaintance since his arrival at FDA in 1999. Dr. Pazdur immediately opened his FDA door to patients and patient advocates to hear our treatment needs and to understand our experiences from diagnosis through the continuum of cancer care. We honored Dr. Pazdur in 2015 with our Public Service Leadership Award, to recognize the way he had used his FDA position to improve the lives of cancer survivors.

Rick and Mary Pazdur in 2015 at an NCCS reception where he was awarded our Public Service Leadership Award.

For decades, Dr. Pazdur has shown up for people living with, through, and beyond cancer—not just as a regulator, but as a listener. In 2015, our former CEO Ellen Stovall sat down with Dr. Pazdur and his wife, Mary, an oncology nurse who was then in treatment for ovarian cancer. That conversation revealed what many of us already knew: Dr. Pazdur understands the human side of this work. He understands the stakes for families like his own, and families across this country. In the decade since that award, Dr. Pazdur has continued his life of public service, advancing science, encouraging collaboration, achieving openness and transparency, and seeing the approval of many life-changing cancer therapies.

“We are grateful that someone with both scientific rigor and lived compassion will be leading CDER, and we look forward to continuing our shared work to make sure every survivor gets the care they need to live well,” said Shelley Fuld Nasso, Cancer Nation CEO.

Cancer Nation and the entire nation are fortunate that Dr. Pazdur will be leading CDER. We are pleased that he has mentored a strong and dedicated team at the Oncology Center of Excellence, focused on oncology product evaluation and research.

The post Statement on Dr. Richard Pazdur Being Named FDA Center for Drug Evaluation and Research Director appeared first on Cancer Nation (Formerly NCCS).

Unirse con nosotros para aprender más sobre la trayectoria de la terapia de células CAR-T y cómo este tratamiento brindó nuevas opciones para esta comunidad. Explicamos el proceso de este tratamiento de inmunoterapia, educamos a pacientes con cáncer y a sus cuidadores con el consentimiento necesario para tener una discusión informada con sus proveedores médicos y compartimos recursos.

La terapia de células CAR T (abreviatura de receptor de antígeno quimérico) utiliza una versión modificada de los glóbulos blancos del propio paciente para atacar las células cancerosas. Actualmente, esta terapia solo está disponible para personas diagnosticadas con ciertos tipos de cáncer de la sangre. En esta presentación, exploramos el proceso de tratamiento de esta inmunoterapia y ayudamos a los pacientes con cáncer y a sus cuidadores a tener conversaciones informadas con sus profesionales de la salud.

Esta charla informal presenta a Arnoldo Rodriguez, M.Ed., un sobreviviente de Texas. El comparte su experiencia personal al elegir y participar en un estudio clínico de terapias con células de CAR T, cómo navegar este proceso y ofrece información sobre la recuperación.

Objetivos de la sesión:

• Mejorar la compresión: Educar a los participantes sobre el proceso de la terapia CAR-T.
• Empoderar pacientes y sus Cuidadores: Equipar a los pacientes y cuidadores con el consentimiento para tener una discusión informada con su equipo médico.
• Abordar las barreras: Desmitificar los conceptos sobre la terapia de CAR-T.

This webinar is also available to watch in English: “Navigating CAR T-Cell Therapy: Your Journey to Recovery”

Vea el seminario de web a continuación o aquí en You Tube.

This webinar is presented by Cancer Nation (formerly the National Coalition for Cancer Survivorship).

Capítulos del Video y Recursos

Capítulos del video:

• 00:00 Introducción del seminario web
• 01:00 ¿Qué es CAR T?, diagnóstico de Arnoldo
• 06:42 Buscando una segunda opinión
• 13:22 Viajando para tratamientos del estudio clínico
• 18:58 Proceso para inscribirse en un estudio clínico
• 24:24 Proceso de consentimiento para estudios clínicos
• 27:55 Experiencias recibiendo tratamiento de CAR T
• 34:33 Seguimiento después del tratamiento
• 35:41 El papel de los cuidadores y los seres queridos
• 40:21 ¿Qué efectos secundarios ha tenido debido al tratamiento?
• 46:20 Consejos para quienes estén considerando el tratamiento de CAR T
• 50:20 ¿Qué deberían sacar los espectadores de esta conversación?

Recursos en línea – Aprenda más sobre la terapia de células T con CAR

• “Células T con CAR: manipulación de células inmunitarias de pacientes para tratar sus cánceres” (National Cancer Institute)
• Let’s Chat CAR T – Un sitio web sobre terapias con células T CAR de Kite Pharma (en inglés). Let’s Chat CAR T tiene recursos en español:
  • ¿Qué es el tratamiento con células T‑CAR?
  • Linfoma no Hodgkin de células B
  • Para proveedores de atención médica: Herramienta de discusión sobre CAR-T
• La Terapia De Linfocitos T Con CAR (Cancer Support Community)

Este seminario web fue presentado por Cáncer Nation (anteriormente conocida como la Coalición Nacional para la Supervivencia del Cáncer) y fue patrocinado por Kite Pharma.

Sobre Arnoldo Rodriguez, M.Ed

Arnoldo Rodríguez, M.Ed., fue un exitoso maestro de aula y administrador escolar que, con el tiempo, se dedicó a compartir prácticas educativas comprobadas con otros educadores de todo el país, convirtiéndose en un exitoso ejecutivo de ventas y gerente de varias empresas educativas de renombre nacional e internacional. Arnoldo prosperaba profesionalmente y se acercaba a la edad de retirarse, pero no estaba listo. En 2019, un diagnóstico de linfoma folicular en estadio 3 lo dejó sorprendido.

Sabía que podía vencer este cáncer tras haber superado con éxito el cáncer de próstata en 2010. Sin embargo, este resultó ser un camino mucho más difícil, plagado de diversos contratiempos y desafíos. A lo largo de tres años y varios tratamientos, experimentó dos recaídas. En 2021, calificó para un estudio clínico de terapia con células CAR-T en el Hospital Oncológico MD Anderson de Houston, Texas. Él y su esposa Teresa, su cuidadora, viajaron a Houston para el ensayo clínico. Tras seis semanas, una tomografía PET final mostró que estaba en remisión completa, y ha continuado durante casi cuatro años. Ahora está completamente retirado y continúa viviendo una vida de rutinas diarias de ejercicio y con el compromiso de hacer una diferencia al compartir su historia con los demás.

Sobre Marielle McLeod, MHA

Marielle Santos McLeod es una defensora latina de pacientes con cáncer, líder en atención médica y sobreviviente de cáncer de colon en estadio III reconocida a nivel nacional, con más de 20 años de experiencia en los sectores público, privado y sin fines de lucro. Actualmente, se desempeña como Directora de Programas y Defensa de Cancer Hope Network, una organización nacional que ofrece apoyo gratuito entre pares a pacientes con cáncer y cuidadores. Tras su diagnóstico, Marielle convirtió su trayectoria personal en una misión poderosa, enfocándose en la educación comunitaria, la conexión entre pares y el acceso equitativo a la atención médica. Durante casi una década, ha trabajado para amplificar las voces latinas en la atención oncológica y la investigación clínica, con énfasis en la autodefensa, la detección temprana del cáncer colorrectal a cualquier edad y la urgente necesidad de diversidad en los ensayos clínicos, la oncología y la defensa de los derechos de las personas con cáncer.

En su puesto profesional, Marielle supervisa múltiples programas nacionales de apoyo entre pares y una iniciativa de defensa de ensayos clínicos, conectando a pacientes y cuidadores con voluntarios capacitados para brindar esperanza y comprensión. También desempeña un papel estratégico en la lucha contra las disparidades en la atención médica, colaborando con redes nacionales de investigación, compañías farmacéuticas y organizaciones de base para promover las experiencias vividas por las comunidades latinas y otras comunidades históricamente marginadas. Ya sea hablando con líderes políticos, moderando debates sobre investigación clínica o acompañando a un paciente recién diagnosticado, Marielle aporta una combinación única de experiencia profesional y empatía personal a cada conversación. Su defensa se basa en su experiencia y está impulsada por un profundo compromiso para garantizar que ningún paciente se enfrente al cáncer solo o sin ser escuchado.

The post Webinar – Navegando la terapia de células T con CAR: su camino hacia la recuperación appeared first on Cancer Nation (Formerly NCCS).

The Partnership notes in the letter: “This is not an ‘end-of-year’ problem as open enrollment begins on November 1 with higher rates. With every day that goes by, more Americans will make the gut-wrenching choice to forego health insurance because their premiums are skyrocketing. At this point, only Congress can remedy this problem—and expediency matters.“

Take Action. Contact your members of Congress at (202) 224-3121 and urge them to extend these tax credits now.

Read the full letter below or download it here.

Read Our Joined Statement to Congress

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The post 30+ Patient Orgs Urge Congress to Extend Health Care Tax Credits Immediately appeared first on Cancer Nation (Formerly NCCS).