Why Michael Milken

Milken’s connection to the cancer survivorship movement reaches back decades. He partnered early with the National Coalition for Cancer Survivorship, now Cancer Nation, to co-chair THE MARCH: Coming Together To Conquer Cancer in 1998, when hundreds of thousands of survivors, advocates, and policymakers filled the National Mall and other venues across the country to demand better care and the research to make it possible.

The March launched a successful effort that doubled the budget of the National Institutes of Health, elevated cancer as a national priority, and brought to the national stage a survivorship movement that is still going strong nearly three decades later.

Photos from THE MARCH on the National Mall, September 1998.

Milken did not stop there. Through the Milken Institute and the FasterCures initiative, he has spent decades tearing down the barriers between discovery and the survivors waiting on it. He founded the Prostate Cancer Foundation, now the world’s largest philanthropic source of prostate cancer research funding, and helped launch the Melanoma Research Alliance. He pushed for the 21st Century Cures Act until it became law. His 2023 book, Faster Cures: Accelerating the Future of Health, makes the case he has been making for 50 years: waiting is not a strategy.

Survivors know the cost of waiting better than anyone. Milken has spent a lifetime refusing to accept it.

What is the March Forward Award?

The March Forward Award recognizes individuals whose leadership, investment, or advocacy has fundamentally changed how our nation researches, treats, or cares for people with cancer. Its name comes straight out of our own history: the 1998 March on Washington, and a belief that has guided us for 40 years.

Progress in cancer care requires us to continue marching forward, demanding the federal investment in research and improvements in care delivery. This award honors the people who refuse to wait. They create the momentum, build the institutions, advance the ideas, and move the rest of us with them.

Forty years, one demand

Forty years ago, survivors and caregivers who refused to accept a health care system that treated them as an afterthought came together to form Cancer Nation. Today, our demand has not changed: quality cancer care for every person cancer touches.

Honoring Milken at our 40th Anniversary Gala closes a circle that opened on the National Mall in 1998. It also opens the next one. Whole-person cancer care, survivorship care plans, and real financial protections are still not standard. That is the work ahead, and this is the night we build the momentum to move it forward. Fittingly, we will gather at the Milken Center for Advancing the American Dream, blocks from the Capitol where survivors made their case 28 years ago.

The post Michael Milken to Receive Cancer Nation’s Inaugural March Forward Award appeared first on Cancer Nation (Formerly NCCS).

Joslyn is an oncology therapist at Inova Peterson Life With Cancer in Fairfax, Virginia, where she offers short-term therapy to people with cancer, their caregivers, and bereaved loved ones. She is also new to the Cancer Nation community, and this year she stood in front of a room at the Cancer Nation Summit taking time to talk about something the cancer world too often rushes past: grief.

Oncology Is Where Her Heart Is: A Path Into Cancer Care

When Joslyn started school for social work, she was certain of one thing; the last place she would ever work was health care. Then, in the spring of 2020, she took a class on illness and family caregiving, and it rearranged everything. She chose a field placement on an inpatient palliative care team at a Philadelphia hospital, not knowing she would walk through those doors that fall in the middle of a pandemic.

Watching medical social workers show up for patients and families every day was what settled it. She finished her MSW, started her career at a major Philadelphia cancer center, and never looked back.

The pull toward service runs in her family. Her grandmother was a teacher, guidance counselor, ombudsman, and psychotherapist. Her mother was a life coach. Joslyn comes from generations of women who spent their lives helping others, and she credits their kindness and commitment with setting her on the path to becoming a social worker and a therapist.

What Grief Looks Like in Cancer

At the Cancer Nation Summit, Joslyn returned to one idea again and again. There is no right or wrong way to grieve. Whatever your role in the cancer experience, she says, you are entitled to name, express, and share your grief.

She wants survivors and caregivers to understand that grief is not a phase to be completed and left behind. “Whether we welcome it or not, grief walks alongside us for the rest of our lives,” Joslyn says.

Grief may look and feel different as time passes, she says, but it stays with us even as our worlds change and grow around it. And everyone deserves to honor it in the way that is truest to them, whether in public or in private, in quiet rituals or shared traditions, through words, art, song, or connection with nature.

Whole Person Cancer Care, From Diagnosis Forward

Joslyn’s clinical interests read like a map of the places cancer care too often goes quiet: palliative care, grief, adolescents and young adults, and fertility preservation. As a young adult cancer survivor, she advocates for a community that is navigating cancer alongside school, careers, romantic relationships, and family planning, and she believes each of these areas needs to be discussed more candidly. She is also a firm believer that palliative care can, and should, begin at diagnosis, with early conversations about values, quality of life, and how to manage pain and treatment side effects.

She has also seen what stands in the way. In oncology clinics, Joslyn spent much of her time helping survivors navigate finances, insurance, transportation, and a scarcity of resources. Sometimes the emotional work had to wait while she focused on keeping a patient’s lights on or figuring out their next meal. And when she succeeded, when she secured a ride to chemotherapy or a grant to help cover rent, the relief itself created room for the feelings to surface. Joslyn’s experiences show us how emotional care and material stability are not separate needs. They hold each other up.

Joslyn wants the system to close the distance between disciplines. From working in clinics, she has watched how differently a hard conversation can go when social workers and doctors prepare together and walk into the room with a shared understanding of a survivor’s emotional needs. More collaborative, interdisciplinary training between oncologists and mental health providers, she says, would change what care feels like for the people receiving it.

You Do Not Have to Do This Alone

Much of Joslyn’s work comes down to a single, quiet correction. She often hears damaging narratives about the need to be “strong” in the face of cancer. When she meets that pressure in the therapy room, she helps survivors examine what strength actually means, who defines it, and who those expectations really serve. Often, just asking the question is enough to open a door. You do not have to be strong. You can say no. You can name a need, and that is neither weakness nor a burden.

Her message to survivors and caregivers, especially those newly diagnosed or newly grieving, holds two truths at once. You do not have to endure this alone, and you deserve to be embraced and protected. Finding support that works for you, whether therapy, a support group, an online community, advocacy work, or some combination, can make the experience even the tiniest bit more bearable.

Joslyn is already looking forward to Hill Day next year, when she plans to speak with elected officials about expanding cancer survivorship care at the state and federal levels. Her message to policymakers is direct. Think about the people you love most. If your spouse, your parent, your child, or your childhood friend were diagnosed with cancer, you would want them to have every resource and investment in their long-term health that they deserve. If the answer is yes, she says, then supporting survivorship care should be a no-brainer.

Want to turn your experience into action, the way Joslyn has?

Learn more about Cancer Nation Advocates and join for free. »
Check out how Cancer Nation Ambassadors are improving survivorship care in their communities »

Frequently Asked Questions

What is Whole Person Cancer Care?
Whole Person Cancer Care means treating the entire person affected by cancer, not only the disease. It includes mental and emotional health, financial stability, practical needs like transportation, and support for caregivers, all alongside medical treatment. As Joslyn Trovati’s work shows, a survivor who cannot pay rent or reach a chemotherapy appointment cannot fully focus on healing. Cancer Nation advocates for a system that treats these needs as connected, from diagnosis onward.

How do cancer survivors and caregivers cope with grief?
There is no single right way to grieve. Grief in the context of cancer can show up at any stage, for survivors and caregivers alike, and it often stays with people long after treatment ends. Joslyn Trovati encourages survivors and caregivers to name and honor their grief in whatever way feels true to them, whether through therapy, ritual, art, connection with others, or time in nature, and to know that they are entitled to that grief no matter their role in the cancer experience.

When should palliative care start?
Palliative care can and should begin at diagnosis, not only at the end of life. Early palliative care focuses on a person’s values, quality of life, and the management of pain and treatment side effects. Beginning these conversations early, Trovati says, helps survivors make care decisions that reflect what matters most to them.

How can cancer survivors and caregivers get involved in advocacy?
Survivors and caregivers can turn their lived experience into policy change through Cancer Nation Advocates, Cancer Nation’s advocacy training program. Advocates learn to speak with elected officials, share their stories, and push for expanded survivorship care at the state and federal levels. Joslyn plans to join Hill Day next year to advocate for exactly that. Learn more at canceradvocacy.org.

What mental health support is available for people with cancer?
Many cancer centers offer behavioral health services, including short-term therapy, support groups, and counseling for survivors, caregivers, and bereaved loved ones. Some programs, like the one where Joslyn Trovati works, provide these services at no cost. Cancer Nation advocates for mental health support to be integrated into cancer care as a standard part of Whole Person Cancer Care, not an afterthought.

The post There Is No Right or Wrong Way to Grieve: Joslyn Trovati on Grief, Survivorship, and Whole Person Cancer Care appeared first on Cancer Nation (Formerly NCCS).

The American Cancer Society Cancer Action Network (ACS CAN) led the brief on behalf of key national public health groups in support of physicians in the American Academy of Pediatrics v. Kennedy lawsuit. This case is pending at the U.S. Court of Appeals for the First Circuit and challenges changes to the membership of the Advisory Committee on Immunization Practices (ACIP) arguing that vaccine recommendations made by that body subsequently lack clear scientific basis and negatively impact disease prevention and survivorship.

The organizations that joined the brief are dedicated to supporting patients and their families across the United States and collectively represent millions of individuals who suffer from various conditions that rely on vaccines for protection, treatment and/or prevention. Individuals who are immunocompromised and especially vulnerable to infectious and vaccine-preventable diseases rely heavily on broad community vaccination to safely participate in daily life activities such as attending school, working outside the home and seeking medical care.

Below are excerpts from the amicus brief highlighting the groups’ concerns and urging the court to side with the plaintiffs:

“Vaccinations play a critical role in promoting public health, preventing serious illnesses and protecting millions of people with serious conditions that compromise their immune systems or otherwise put them at heightened risk for severe illness from vaccine-preventable diseases. Amici have strong and continuing interests in protecting access to and development of vaccines that are proven to be safe and effective, and therefore profound interest in maintaining the institutional integrity of the Advisory Committee on Immunization Practices (ACIP) and ensuring that its membership complies with applicable legal standards.”

“Given the implications of ACIP decisions for public health, it is critical that its recommendations be evidence-based, grounded in the latest science and informed by the professional expertise and experience of its members. ACIP’s governing statutes, regulations and charter require as much. The recent termination and replacement of ACIP’s membership, and ACIP’s subsequent changes to its vaccine recommendations, represent a radical departure from those requirements and risk reducing access to and undermining confidence in vaccines. The public health consequences of these actions are grave. People with cancer and other life-altering conditions face heightened risks as community protection erodes and access to promising vaccine treatments is delayed.”

“ACIP’s changes to vaccine recommendations have a sweeping impact on American public health generally and on the health of patients with cancer and other chronic conditions in particular. Any changes must therefore be well-considered, evidence-based and made by qualified experts in the field. The Department of Health and Human Services cannot ignore the ACIP membership criteria established by statute, regulation and the ACIP charter.”

The following organizations have signed onto the brief and are represented by ANDERSON & KREIGER LLP in the filing:

Read the full amicus brief below or download:
ACIP Amicus Brief (PDF)

Read the ACIP Amicus Brief

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The post Cancer Nation Joins Amicus Brief in Suit Over Vaccine Recommendations appeared first on Cancer Nation (Formerly NCCS).

We urged OMB to preserve transparent, evidence-based grantmaking that protects scientific integrity, supports continued innovation in cancer research, and ensures patients and cancer survivors benefit from the discoveries that improve care and quality of life.

Read the full comment letters below or download them:
Cancer Nation Letter to OMB (PDF)
Cancer Leadership Council Letter to OMB (PDF)

Read Our Letter to OMB

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The post Cancer Nation Responds to OMB Proposed Rule On Medical Research appeared first on Cancer Nation (Formerly NCCS).

The Cancer Nation Leadership Academy equips Ambassadors with the skills, knowledge, and community to lead change. Each Cancer Nation Ambassador develops and leads a project that addresses real gaps in cancer care — from clinical settings to community spaces — helping ensure more people living with, through, and beyond cancer receive the care they deserve. Their work demonstrates what’s possible when people with lived experience step forward to lead change.

“Survivorship starts in the community, and every community’s needs look different. Cancer Nation Ambassadors know their communities best, so they’re the ones who identify those gaps and step up to close them. Their projects range from wellness to sexual health, supporting caregivers, and reaching underserved communities, and every one of them moves us closer to whole person cancer care.” said Cancer Nation CEO Shelley Fuld Nasso.

“The Cancer Nation Leadership Academy brings together a diverse group of advocates and survivorship professionals to learn from each other and drive survivorship projects across the nation,” said Veronika Panagiotou, PhD, Cancer Nation Director of Advocacy and Programs. “Every ambassador brings passion and determination to their work for the cancer community. These are the leaders who will transform cancer care.”

# # #

Grant funding for the 2026 Cancer Nation Leadership Academy program provided by Genmab.

The post Meet the 2026 Cancer Nation Leadership Academy Ambassadors appeared first on Cancer Nation (Formerly NCCS).

His parents, who immigrated to the United States from India, became his full-time navigators, dropping almost everything to manage his care, track his treatment, and make the decisions a three-year-old could not. When the standard protocol failed, they sought second opinions and found Memorial Sloan Kettering, where Eshan joined an immunotherapy trial that saved his life.

The cost of getting there was not only medical. Eshan describes the central challenge of his survivorship as access; to information, to guidance, and to his parents’ ability to navigate and advocate for him and his care. The trial worked, but reaching it took a level of persistence, resourcefulness, and second-opinion-seeking that not every family is positioned to manage.

The Turning Point

Eshan was drawn to advocacy when he watched other survivors who had walked similar paths use their voices to make a difference. That recognition, that one person’s story could move something larger, reframed what his own experience could become.

He channels that advocacy through entrepreneurship. As a Cancer Nation Advocate and Ambassador (formerly an Elevating Survivorship ambassador, now part of the Cancer Nation Leadership Academy), he connected to a community of people working toward the same goal from different angles. His own angle is the private market, and it took shape as Arul Health, the company he is building to solve the navigation and access problems he lived through.

The Advocacy Work

Eshan recently graduated from Harvard and is building Arul Health, his Boston-based health care startup, around the problem that defined his survivorship: care navigation. Patients with complex diagnoses can spend months simply finding the right care, working through insurance, specialist waitlists, and trial eligibility, often alone and often at the hardest moments of their lives.

Eshan’s view is clear: navigation needs to change. It should be simpler to manage care, and it should function as what he calls “a perfect symphony of health care and social care,” rather than a maze each family has to solve from scratch.

When it comes to beginning advocacy work, Eshan knows there is no single correct way to carry a cancer diagnosis, and that figuring out where it fits is something everyone does differently. As he puts it, “Your story is flexible. It can represent as much or as little of your life as you choose.”

Why It Matters

Eshan points to gaps in navigation as a critical juncture that decides outcomes, and it is exactly where Cancer Nation’s call for Whole Person Cancer Care lives. Survivorship Care Plans, coordinated navigation, and the connection between health care and social care are not administrative details. For a family staring down a failing protocol, they are the difference between finding the next option and never knowing it existed.

Eshan’s message to the cancer care system is just as clear. The work his parents did, becoming full-time navigators overnight, should not depend on luck or resources. Better navigation is not a convenience. It is critical access, and access shapes who survives.

Want to get involved in cancer advocacy?

Learn more about Cancer Nation Advocates and join for free. »
Check out how Cancer Nation Ambassadors are improving survivorship care in their communities »

The post Saved by a Trial, Building the Fix: Eshan Vishwakarma’s Path from Patient to Founder appeared first on Cancer Nation (Formerly NCCS).

This bold, bipartisan legislation is designed to strengthen survivorship care and improve quality of life for the nearly 18 million Americans living with, through, and beyond cancer. From quality survivorship care planning and care coordination to employment support, this conversation explores how the bill addresses the real challenges survivors face every day and what it could mean for the future of cancer care.

Watch the town hall below or here on YouTube.

Video Details

Links & Other Resources:

• • Download the slide deck »
  • Cancer Nation’s CCSA Webpage
  • Children’s Cancer Cause CCSA Webpage
  • Lymphoma Research Foundation Statement on CCSA
  • Track H.R. 8839 on Congress.gov, see cosponsors and full bill text

About the Bill

The Lainie Jones Comprehensive Cancer Survivorship Act is bipartisan legislation introduced in the U.S. House of Representatives by Reps. Debbie Wasserman Schultz (D-FL), Brian Fitzpatrick (R-PA), Mark DeSaulnier (D-CA), and Joe Wilson (R-SC). The bill addresses the full spectrum of cancer survivorship, from diagnosis through the end of life. More than 50 national cancer organizations have already endorsed it.

The bill includes eight key provisions:

• Medicare coverage for cancer care planning. Establishes reimbursement for clinicians to provide survivorship care plans at diagnosis, during treatment changes, and at the transition to post-treatment care. In Cancer Nation’s 2025 Survivorship Survey, only 36% of survivors received a survivorship care plan, down from 43% the prior year, even survivors who received one reported feeling more confident managing their post-treatment care.
• Survivorship transition tools. Directs a stakeholder process to develop and publish best practices for using health information technology to improve care transitions, making it easier for survivors to carry a complete record of their cancer treatment into the rest of their lives.
• Alternative payment model study. Commissions research to identify gaps in survivorship care, unmet needs, access and reimbursement barriers, and variations in quality and outcomes, with the goal of designing a data-driven payment model.
• Employment assistance program. Creates grants for nonprofit organizations supporting cancer survivors facing workforce challenges, including time off, transportation, and childcare.
• Survivorship progress report. Directs the Government Accountability Office to assess progress under the National Cancer Act of 1971 and evaluate the contributions of the Office of Cancer Survivorship.
• Medicaid coverage for pediatric and adolescent survivorship. Formalizes transition-of-care plans as a Medicaid benefit for childhood and adolescent cancer survivors, so that young people moving from active treatment into the rest of their lives have a documented road map for their ongoing care.
• Medicaid coverage for fertility preservation. Ensures coverage for fertility preservation services under Medicaid for survivors whose cancer treatment may affect their ability to have biological children in the future. For adolescents and young adults, preserving fertility can be a significant quality of life issue that extends far beyond treatment.
• Office of Cancer Survivorship. Places the Office of Cancer Survivorship within the Office of the Director of the National Cancer Institute and provides it the authority to fund survivorship research, support education and communication efforts, and serve survivors, researchers, and the clinicians who care for them. Established in 1996, the Office has never had a statutory foundation. This provision would change that.

Voices from the Conversation

Congresswoman Wasserman Schultz, a breast cancer survivor herself, named the bill for her late friend and constituent Lainie Jones, who survived seven different types of cancer before passing away. “Survivorship must address the aspects of our lives that intersect with our physical and mental health, like education, work, transportation, children, and more,” she said.

Three survivors joined a panel discussion to share what this legislation means in practice. Cierra Morgan, 22, has been living with carcinoid cancer since age 14 and described navigating the transition from pediatric to adult care largely on her own, including figuring out fertility preservation options no one had raised when she was first diagnosed.

“No one really prepared me to be in the adult ward when I turned 18, even though I still felt like a kid.”

— Cierra Morgan, carcinoid cancer survivor, Children’s Cancer Cause

Whitney Neighbors, an eight-year survivor of stage 4 diffuse large B-cell lymphoma, described feeling “adrift” when her oncologist left her treating hospital, never having received a formal survivorship plan, and spending years without clear answers about whether her ongoing symptoms were treatment-related.

“It’s time for phase two of cancer treatment: research and support for diagnosing and treating long-term side effects and early detection for secondary cancers.”

— Whitney Neighbors, stage 4 diffuse large B-cell lymphoma survivor,
Lymphoma Research Foundation

Daria Ross, a seven-year triple negative breast cancer survivor and public health professional, shared discovering years after treatment that the neuropathy causing her to fall was a long-term effect of chemotherapy. She learned it not from a doctor, but from a conversation with other survivors at a Cancer Nation summit.

“Once you are in this club of cancer survivorship, everything that your body does, you’re reacting to. That never goes away. Having a survivorship care plan as a guide, as a compass, would be so tremendous.”

— Daria Ross, triple negative breast cancer survivor, Cancer Nation

All three emphasized that self-advocacy should not be a prerequisite for good survivorship care, and that marginalized communities face the steepest barriers.

How to Take Action

• Contact Your Representatives and ask them to co-sponsor the Lainie Jones Comprehensive Cancer Survivorship Act. Visit house.gov to find your member’s office and phone number, or call the Capitol switchboard at (202) 224-3121. When you call, identify yourself as a constituent, name the bill and its House bill number (H.R. 8839), share your personal connection to cancer survivorship, and make a direct ask for co-sponsorship.
• Sign-On as an Endorser: If you are a national nonprofit organization, medical center, or medical professional society, please consider signing on in support of the bill. Sign On Here (Google Form)
• Spread the Word: Download and share our CCSA Social Media Toolkit to help raise awareness and amplify support for the CCSA. Whether you are an advocate, organization, or community partner, this ready-to-use resource makes it easy to share information and encourage support for the bill. The toolkit includes handles, hashtags, sample posts, and a link to a graphics template to get you started.
  CCSA Social Media Toolkit

About the Speakers

Sue Emmer

Sue founded Emmer Consulting (which later became I Street Advocates) in 1999. In that time, she has carved out a reputation as a health expert who advocates for non profit clients representing hospice, long term care, child cancer survivors, and people living with Alzheimer’s.

Sue started her career on Capitol Hill where she quickly rose to senior advisor positions. From 1988 to 1994, Sue served in key roles on Capitol Hill. She was a Legislative Assistant for Senator Don Riegle who served on the Senate Finance Committee. Prior to that time, she was a Legislative Assistant for Senator Bob Graham. After leaving Capitol Hill, Sue served as a health policy analyst at the Department of Health and Human Services Assistant Secretary for Legislation (ASL) office for two years.

From 1996 until September of 1999, Sue was an associate at Foley and Lardner, LLP one of the nation’s largest law firms where she served in both the government affairs and health care practice groups. During her tenure, Sue helped grow and develop a new government affairs practice.

Sue received her J.D. from The Georgetown University Law Center and her B.A in history, from Brown University, where she was a varsity tennis player. Sue is a member of the Health on Wednesday (HOW) organization, a Washington, D.C. based organization of women in Washington that represents the interests of health professionals and trade associations.

Meghan Gutierrez

Meghan Gutierrez is the Chief Executive Officer of the Lymphoma Research Foundation, the nation’s largest nonprofit organization devoted to funding lymphoma research and education, advancing both the study of new cancer therapies and improved patient care.

An expert in government relations and health care policy, Gutierrez has pursued an array of public policy issues during her career, ranging from mental health parity and rare disease awareness to medical technology and the treatment of chronic disease. Following her work as a Congressional staff member for one of the U.S. House of Representatives’ foremost leaders on health care policy, she served as a health policy and communications advisor for several national nonprofit and educational institutions, including Columbia University and the Partnership for a Drug-Free America.

Gutierrez joined the Lymphoma Research Foundation in 2008 as its chief program, policy and communications officer. She was a driving force behind programs such as the country’s only Adolescent and Young Adult Lymphoma Initiative and development of the first mobile app for people with lymphoma. She became Chief Executive Officer in 2014. In this role Gutierrez represents the Foundation before several audiences, including the U.S. Congress, Department of Defense, Food and Drug Administration and National Institutes of Health. She has written and lectured extensively about the needs of lymphoma patients and served on committees and panels of the American Society of Clinical Oncology, American Society of Hematology, Institute of Medicine, and National Cancer Institute, among others.

Cierra Morgan, MS

Cierra Morgan is a childhood cancer survivor, and advocate who is passionate about using storytelling to create connection and change. After being diagnosed with carcinoid cancer as a teenager, she learned firsthand how life-changing a strong support system can be and how important it is for patients and families to feel seen, heard, and understood.

A graduate of the University of Southern California, Cierra studied Journalism and Health & Human Sciences, combining her love of writing with her interest in healthcare and patient advocacy.

Throughout her journalism career, Cierra has reported on health, education, and public policy issues for outlets including the Los Angeles Times, The Washington Times, and USC Annenberg Media. She has also written for The Children’s Cancer Cause, where she interviewed survivors and families and explored topics ranging from mental health to long-term survivorship care.

Whether she’s reporting a story, mentoring a young patient, or speaking about her own journey, Cierra believes in the power of sharing experiences to help others feel less alone.

In the fall Cierra will begin pursuing her Juris Doctor at Suffolk Law School in Boston, where she hopes to build on her experiences as a survivor, journalist, and advocate.

Shelley Fuld Nasso, MPP

Shelley Fuld Nasso, MPP, is CEO of Cancer Nation—the voice of the 18 million Americans living with, through, and beyond cancer. Under her leadership, Cancer Nation (formerly the National Coalition for Cancer Survivorship) pushes for bold policy change to ensure every survivor has the right to not just survive—but thrive. From Capitol Hill to cancer centers, Shelley elevates survivor voices and demands care that actually works for the people living it.

A defining part of her work is helping survivors and caregivers find their voice in the democratic process—whether it’s their first visit to Capitol Hill or telling their story to someone in power. Through advocacy training and deep community-building, she empowers people to speak out, be heard, and help shape the policies that shape their lives.

Before joining Cancer Nation in 2013, she led public policy initiatives at Susan G. Komen. She holds degrees from Rice University and the Harvard Kennedy School. Shelley’s advocacy is deeply personal—rooted in love for her friend Dr. Brent Whitworth, a compassionate physician who died of cancer at 43, and in solidarity with countless others in her life affected by cancer.

She lives in Maryland with her husband and three sons. When not pushing for a cure for care, she’s likely found on a paddleboard, in a yoga class, or solving a crossword.

Whitney Neighbors

Lymphoma Touch Points

• Survivor, Diffuse Large B Cell Lymphoma, 2018
• Lymphoma Research Foundation, Board of Directors, Member (2025)
• Serve as Chair of Lymphoma Epidemiology of Outcomes (LEO) Participant Advisory Council; M.D. Anderson Cancer Center delegate, Lymphoma and Myeloma Clinic Houston, Texas (2022 to present)
• Author, Multiple Patient Advocate Letters for support of Academic and Clinical Hematology Oncology Research Grant Submissions
• Texas Gulf Coast Chapter Blood Cancer United, Member of the BCU Executive Challenge Team and Legislative Advocacy Team
• Avid Fundraiser for Blood Cancer Organizations

Personal and Professional

• Licensed Attorney in the State of Texas, 2001
• Married and have one son

Daria Ross, MPH

Daria L. Ross is a breast cancer survivor, advocate, and community leader from Flint, Michigan. Diagnosed in 2018 with Stage 2 Triple-Negative Breast Cancer, she turned her experience into a mission to educate, empower, and advance health equity. Now a seven-year survivor, Daria champions patient education, peer support, and reducing disparities in cancer care, guided by her daily affirmation, #FaithOverFear.

She serves on the American Cancer Society’s Making Strides Flint Volunteer Leadership Committee, is a VOICES for Black Women Ambassador, and an ANGEL Advocate with the Tigerlily Foundation. As Board Chair of Girls With Knowledge, Inc., she supports initiatives that equip youth and address social, cultural & economic disparities, and, as a 2022 Elevate Ambassador with Cancer Nation, she developed advocacy and survivorship tools to support breast health and participation in clinical trials.

Beyond advocacy, Daria co-leads The Calla Lily Assignment, an event design business with her aunt, P.J., dedicated to creating memorable, story-driven experiences. She holds a Bachelor’s degree in International Relations (Magna Cum Laude) from Central Michigan University and a Master of Public Health, Population and Health Sciences from the University of Michigan, with a certificate in Health Behavior & Health Equity.

Steve Wosahla

As the Chief Executive Officer of Children’s Cancer Cause, Steve is responsible for the strategic management and operations of the nation’s preeminent childhood cancer policy organization.

Steve identifies and advances issues that will improve the treatment and lives of childhood cancer patients and their families with Congress, the Administration, federal agencies and state governments. He is also responsible for ensuring that families have the opportunity to participate as advocates in the policy process.

In his three decades of executive leadership at health organizations and nonprofits, including positions with the American Diabetes Association, HopeLink, and the National Multiple Sclerosis Society, Wosahla has demonstrated steady, effective leadership and an aptitude for creating value-added partnerships. Prior to joining the Children’s Cancer Cause in 2020, Wosahla served as Vice-President of Corporate Alliances & Solutions for the American Cancer Society.

Steve can be contacted on any questions concerning organizational management, public policy positioning or program development.

The post The Right to Thrive: A Conversation on the Lainie Jones Comprehensive Cancer Survivorship Act appeared first on Cancer Nation (Formerly NCCS).

In our most recent Survivorship Survey, Cancer Nation asked cancer survivors about their employment status and attitudes toward work. Most respondents said they either must work or want to work after diagnosis and during treatment. Those who cannot work are physically unable to do so, not unwilling. This week, the Centers for Medicare & Medicaid Services (CMS) issued an Interim Final Rule setting the standards for Medicaid expansion states to implement Medicaid work requirements. The rule would set an unreasonably burdensome standard for cancer survivors to prove they are medically frail and that their disease or condition prevents them from working. This standard is also unnecessary because cancer patients are not defrauding the system. Instead, they are working, if at all possible, out of necessity or preference.

The Interim Final Rule ignores the needs of people with cancer and other serious and complex illnesses and puts many of them at risk of losing their Medicaid coverage at a time when they need it most.

CMS established a definition of medical frailty that is at odds with states’ initial expectations and we believe at odds with the law. Under the rule, individuals would be required to prove that they are medically frail and then that their condition prevents them from working. In addition, self-declaration would be permitted only for one year.

Beginning in 2028, states would be limited in accepting self-attestation. At that time, people with cancer would be confronted with serious challenges of documenting their condition and inability to work. They would also be asking overburdened clinicians to assist them in the documentation effort instead of relying on their care teams for life-saving care.

Cancer care must be delivered without delay. We do not believe that policymakers intended work requirements to deprive cancer patients of the care they need because they lose Medicaid coverage or to force serious delays in care because of an overly burdensome documentation process.

We will be directing our attention and energy to explaining to policymakers the harm that the interim final rule may cause families, given that 1 in 3 American children with cancer and 1 in 10 Americans with cancer overall depend on Medicaid for their cancer care. We will also convey what we know – cancer patients are not defrauding the health care system. We look forward to changes in this rule that are responsive to the needs of people with cancer and other serious diseases and that give states more flexibility in implementing work requirements.

# # #

The post Cancer Nation Statement: Medicaid Work Requirements Will Unfairly Burden Cancer Survivors appeared first on Cancer Nation (Formerly NCCS).

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).