The Golden Hour: What Happens When Your Child Spikes a Fever During Cancer Treatment

Posted on January 21, 2026January 21, 2026 by Jennifer Glover

Key Takeaways:

The Golden Hour is the critical 60-minute window to deliver antibiotics when a child with cancer spikes a fever.
Children with central lines (the tubes that deliver chemotherapy) are at high risk for serious infection because their immune systems are weakened.
Cure 4 The Kids Foundation reduced its average time to antibiotics from 85 minutes to 33 minutes, exceeding national benchmarks.
These results match or exceed outcomes from major academic children’s hospitals, achieved in an outpatient setting.
The improvement came from frontline staff examining every step of the process and finding ways to move faster—no expensive technology required.

When your child spikes a fever during cancer treatment, time slows down and speeds up all at once. You’re watching the clock. You’re watching your child. You’re watching the team move around you and wondering if everything is happening fast enough.

I’ve talked to enough parents to know that feeling. It stays with them.

I want to tell you what our team has been doing to honor that urgency.

What Is the Golden Hour in Pediatric Oncology?

The Golden Hour refers to the critical 60-minute window to deliver antibiotics to a child with cancer who develops a fever. Because chemotherapy weakens the immune system, children with central lines—the tubes that deliver treatment directly into their bloodstream—are at high risk for serious infection. Their immune systems can’t fight infection the way ours can, and that’s why getting antibiotics started within 60 minutes can be lifesaving.

What is Febrile Neutropenia?

You may hear your care team use the term “febrile neutropenia.” This simply means fever in a child whose immune system has been weakened by chemotherapy. “Febrile” means fever, and “neutropenia” means the body has very few neutrophils, which are the white blood cells that fight infection. So, because your child’s body can’t fight infection on its own, febrile neutropenia is treated as a medical emergency.

Where We Started

I believe in being honest with our families, and with ourselves. So here’s where we were a year ago: our average time was 85 minutes.

To put that in perspective, nationally, roughly half of pediatric emergency departments consistently meet the 60-minute goal. Major academic children’s hospitals—institutions with 24-hour pharmacies, dedicated emergency departments, and teams of residents—report median times between 55 and 75 minutes. Some published studies show baselines over 90 minutes prior to launching improvement initiatives.

We weren’t behind. By national standards, we were in the middle of the pack.

But “middle of the pack” isn’t good enough when it’s your child with a fever. Our team knew we could do better.

Why Outpatient Specialty Centers Can Move Faster

Here’s something important to understand: hospitals and outpatient centers are built for different things.

Hospitals are designed to handle everything—trauma, surgery, complex inpatients, emergencies of every kind. That breadth is their strength. But it also means a child with a fever may be one of dozens of urgent situations competing for attention at any given moment.

An outpatient specialty center like Cure 4 The Kids Foundation is different. We do one thing: care for children with cancer and rare diseases. When a child with a central line spikes a fever, they’re not waiting behind a car accident or a cardiac event. Our team knows them. Their chart is already open. The pharmacist who will compound their antibiotic is thirty feet away, not in a central pharmacy serving an entire hospital.

Neither model is better. They serve different purposes. But for this specific situation—a known patient, a predictable emergency, a race against the clock—the focused outpatient model has real advantages. And our team has learned to use every one of them.

How Our Team Cut Time to Antibiotics in Half

This is the part that makes me proud.

A group of nurses, providers, pharmacists, and lab staff came together—not because anyone made them, but because they saw a problem and wanted to fix it. They walked through every step of the process. They asked hard questions. They challenged the way things had always been done.

They found minutes hiding everywhere. In the compounding suite. In the order sets. In the handoffs between teams. In the small hesitations that happen when people aren’t sure if they should ask for help.

And then they fixed them. One by one.

There was no magic solution. No expensive new technology. Just people who cared enough to look honestly at their work and commit to doing it better.

Where We Are Now: Cure 4 The Kids Foundation’s Golden Hour Results

Throughout 2025, we tracked every antibiotic administered to a patient with a central line.

Cure 4 The Kids Foundation’s Time to Antibiotics (2025)

Starting Baseline

85 minutes

2025 Average

57 minutes

December 2025

33 minutes

National Benchmark

60 minutes

National Pediatric ED Range

55–90+ minutes

We now consistently meet the Golden Hour benchmark. Some months, we’re well under it.

For context: These results put us on par with the best published outcomes from major academic children’s hospitals around the country—and we’re doing it as an outpatient clinic, without a 24-hour pharmacy, without a dedicated emergency department, without the infrastructure those institutions have.

Why I’m Sharing This

I’m not sharing this to brag. I’m sharing it because families deserve to know.

When I started Cure 4 The Kids Foundation in 2007, it was because I believed Nevada families shouldn’t have to leave home to get excellent care for their children. I’d seen too many families torn apart by distance—siblings separated, parents missing work, support systems left behind—because the assumption was that “real” pediatric cancer care happened somewhere else.

I wanted to build something that proved that wrong. This—what our team did in 2025—is that proof. Not because I told them to. Because it’s who they are.

To Our Families

If your child is being treated at C4K, here’s what I want you to know:

When your child spikes a fever, we feel the urgency too. We’re not just going through the motions. We’ve built systems to move fast, and we hold ourselves accountable to using them. We track our own performance—not because someone makes us, but because your child deserves that kind of attention.

You trusted us with the most precious thing in your life. This team takes that seriously. Every day. Every patient. Every minute.

To the Cure 4 The Kids Foundation Team

I’ve watched this organization grow from a kitchen table idea to what it is today. I’ve seen a lot of things I’m proud of.

This is near the top.

Not because of the numbers—though they’re remarkable. Because of what the numbers represent: a team that looked at itself honestly, identified where it could do better, and then actually did it. Without excuses. Without waiting to be told.

That’s the C4K Way. And you lived it.

When I started C4K, people told me Nevada couldn’t support this kind of care. That families would always have to leave.

This team just proved them wrong, 33 minutes at a time.

This is why I built C4K. This right here is the whole point.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

Why Pediatric Cancer Requires Specialized Care

Posted on January 16, 2026January 16, 2026 by Jennifer Glover

Key Takeaways:

Children are not small adults. Pediatric cancers differ biologically from adult cancers and require treatment protocols designed specifically for growing bodies.
Specialized centers have better outcomes. Children with cancer treated at specialized, pediatric cancer centers where care is standardized and multidisciplinary have better survival outcomes than those treated in lower-volume or non specialty settings.
Growing bodies need growing expertise. Treatment must account for developing organs, bones, and brains—protecting your child’s future health while fighting cancer today.
Pediatric oncology teams are uniquely trained. From oncologists to nurses to child life specialists, every team member understands the specific needs of children with cancer.
The right center offers more than medicine. Comprehensive pediatric programs provide family support, educational continuity, and age-appropriate emotional care throughout treatment.

When your child is diagnosed with cancer, you want answers—and you want them now. One of the most important decisions you’ll face is where your child will receive treatment. Here’s what every parent needs to know about why specialized pediatric cancer care matters.

Why Can’t My Child Be Treated at a Regular Hospital?

This is one of the first questions many parents ask after their child’s diagnosis. It’s a fair question, especially when a well-respected hospital is close to home.

The short answer: Your child can receive care at many hospitals, but the quality of that care varies dramatically. Pediatric cancer is rare, highly specialized, and fundamentally different from adult cancer. Treatment requires expertise that most general hospitals simply don’t have.

Here’s why that matters for your child.

Children’s Bodies Are Different—And So Are Their Cancers

Childhood cancer isn’t the same disease as adult cancer. The types of cancer children develop, where they originate, and how they behave are biologically distinct.

Different Cancer Types

The most common childhood cancers—leukemias, brain tumors, neuroblastoma, Wilms tumor, and lymphomas—are rarely seen in adults. Meanwhile, the cancers most common in adults (breast, lung, colon, prostate) almost never occur in children.

Different Biology

Pediatric tumors often grow faster than adult cancers, but they also frequently respond better to treatment. This means protocols must be precisely calibrated—aggressive enough to work, but carefully designed to minimize long-term damage.

Different Causes

While many adult cancers are linked to lifestyle factors or environmental exposures over time, most childhood cancers arise from genetic changes during normal development. This means prevention strategies that work for adults don’t apply to children, and treatment approaches must account for these genetic differences.

Growing Bodies Need Specialized Treatment Protocols

Perhaps the most critical reason for specialized care is what’s happening inside your child’s body right now: growth.

Children’s organs, bones, brains, and hormonal systems are still developing. Cancer treatment—including chemotherapy, radiation, and surgery—can affect that development in ways that don’t apply to fully-grown adults.

Brain Development

A child’s brain continues developing into their mid-twenties. Radiation and certain chemotherapies can impact cognitive development, memory, and learning. Pediatric specialists know which treatments carry these risks and how to modify protocols to best protect neurological function.

Bone Growth

Treatment can affect growth plates, potentially impacting height and skeletal development. Pediatric teams monitor growth carefully and adjust approaches when possible.

Fertility Preservation

Some treatments affect future fertility. Pediatric specialists discuss preservation options before treatment begins—conversations that require specialized knowledge about age-appropriate options.

Heart and Organ Health

Certain chemotherapy drugs can affect heart function differently in children than adults. Pediatric protocols include specific monitoring and dosing adjustments to protect developing organs.

Adult oncologists—even excellent ones—aren’t often trained to navigate these developmental considerations. Pediatric oncologists spend their entire careers understanding how to balance effective treatment with protecting a child’s future.

Specialized Centers Have Access to Pediatric-Specific Clinical Trials

When standard treatments aren’t enough, clinical trials offer hope. But pediatric clinical trials are different from adult trials—and they’re only available at certain centers.

Why this matters: In the United States, at least half—and in many series more than 60%—of children with cancer are treated on clinical trials, compared to a small minority of adults (generally less than 5%).

High participation in pediatric-specific clinical trials, often coordinated through national cooperative groups, has been a key driver of the dramatic increase in childhood cancer survival from around 60% in 1970 to over 85% today.

Pediatric cancer programs participating in research give families access to the latest treatment advances. General hospitals typically don’t participate in these networks, often because they lack a dedicated pediatric oncology program.

What Makes a Pediatric Cancer Team Different?

Specialized pediatric cancer care isn’t just about having a doctor who treats children. It’s about an entire team trained to care for young patients and their families.

Pediatric oncologists and hematologists: Physicians who completed fellowships specifically in childhood cancer, with ongoing training in the latest pediatric protocols.
Pediatric oncology nurses: Nurses certified in administering chemotherapy to children, managing pediatric ports and central lines, and recognizing symptoms specific to young patients.
Child life specialists: Professionals trained to help children understand and cope with their diagnosis and treatment through play, preparation, and emotional support.
Pediatric psychologists and social workers: Mental health professionals who specialize in helping children and families navigate the emotional impact of cancer.
Pediatric pharmacists: Pharmacists who understand pediatric dosing—which is calculated differently than adult dosing and requires specialized expertise to ensure safety and effectiveness.
Educational liaisons: Staff who coordinate with your child’s school to maintain educational continuity during treatment.

This multidisciplinary approach is essential for comprehensive care.

What to Look for in a Pediatric Cancer Program

Not all pediatric programs are equal. When evaluating where your child will receive care, consider these factors:

Board-certified pediatric oncologists and hematologists. Confirm that physicians are specifically trained and certified in pediatric oncology—not adult oncologists who “also see children.”
Multidisciplinary care team. Look for programs with dedicated pediatric oncology nurses, child life specialists, social workers, and mental health support integrated into the care team.
Clinical trial access. Ask whether the program participates in the Children’s Oncology Group (COG) or other pediatric research consortiums. Access to clinical trials can be lifesaving.
Survivorship programs. Long-term follow-up care is essential. Ask about dedicated survivorship clinics that monitor for late effects of treatment into adulthood.
Family-centered support services. Comprehensive programs offer family support including financial counseling, sibling support, educational coordination, and caregiver resources.
Experience with your child’s specific diagnosis. Pediatric cancers are rare, and some are extremely rare. Ask how many children with your child’s diagnosis the center treats annually.

The Survival Rate Difference

The progress in childhood cancer survival is one of medicine’s greatest success stories. Today, more than 80% of children with cancer in countries like the US survive at least five years, compared with less than 25% in the 1960s.

But this progress happened because of specialized pediatric research and treatment—not in spite of it. The dramatic improvements came from pediatric-specific clinical trials, protocols designed for children’s bodies, and care delivered by teams dedicated exclusively to young patients.

When families choose specialized pediatric cancer care, they’re giving their child access to the expertise that created these survival rates.

Your Child Deserves Specialized Care

As a parent, you’re your child’s most important advocate. Understanding why specialized care matters is the first step in ensuring your child receives the best possible treatment.

Pediatric cancer is rare, and it requires rare expertise. The physicians, nurses, and support staff at dedicated pediatric cancer programs have devoted their careers to one mission: helping children survive cancer and thrive afterward.

Your child is not a small adult. They deserve care designed for exactly who they are: a child with their whole life ahead of them.

Unconditional Access to Pediatric Cancer Care: Our Promise to Every Child

Posted on December 22, 2025December 22, 2025 by Jennifer Glover

Key Takeaways:

Cure 4 The Kids Foundation never denies care to a child with cancer for any reason
Our open-access pediatric oncology model means treatment is never conditional on insurance, ability to pay, or research participation
We complement research-focused institutions by ensuring every child has a place to receive care
Nevada families can access specialized pediatric cancer treatment close to home

There are moments in healthcare when values are tested in real time, with real families, under impossible circumstances.

A childhood cancer diagnosis is one of those moments.

At Cure 4 The Kids Foundation, we made a decision long ago about how we would respond when a child is diagnosed with cancer. That decision has never changed:

We do not turn away a child with cancer—ever.

Not for financial reasons
Not because of insurance limitations
Not because a diagnosis is complex or rare
Not because a child’s care journey has already begun elsewhere
Not because a family is unable—or unwilling—to participate in research or clinical trials

Every child with cancer who is referred to Cure 4 The Kids Foundation is accepted and treated.

What Is Open-Access Pediatric Oncology?

Unconditional access is more than an operational policy. It is a moral stance.

Cure 4 The Kids Foundation operates under an open-access pediatric oncology model, which means that care is never conditional. A child does not have to qualify financially. A family does not have to navigate eligibility thresholds. A diagnosis does not need to fit neatly into a predefined category. And participation in research is never a prerequisite for receiving care.

Cancer does not wait for approvals. It does not pause while families sort through insurance. And it does not respect institutional boundaries or protocols.

Children deserve care when they need it—not when they qualify for it.

At Cure 4 The Kids Foundation, medically necessary cancer treatment comes first. Everything else follows.

Why Our Model Differs from Research-Based Pediatric Cancer Programs

Many people assume that all pediatric cancer programs function the same way. They do not.

Some nationally recognized institutions are built primarily around research and clinical trials. These centers are essential to advancing cures and improving outcomes—and their work saves countless lives. But research-based models necessarily operate under selective admission criteria. Eligibility requirements, protocol design, study capacity, and institutional limitations all determine which children can be accepted.

The result is a reality that is not widely understood: more children are referred to these institutions than can ultimately be admitted, even though public perception often suggests that every child referred is treated.

Moreover, enrollment and attendance decline for adolescents compared with younger children, highlighting that not all who could benefit from these centers actually receive care there. This is often because of referral patterns, insurance, geographic distance, and capacity restraints as well.

This is not a criticism. It is simply how research-driven systems function. But it does create a gap—and that gap is where families can feel lost, frightened, and unsure of where to turn next.

How We Ensure No Child Falls Through the Cracks

Cure 4 The Kids Foundation exists to fill that gap.

We ensure that every child with cancer has a place to go, especially when:

A child does not qualify for a research protocol
A family chooses not to participate in a clinical trial
Treatment has already begun elsewhere
A child requires long-term outpatient management close to home

Our role is not to replace research hospitals. It is to complement them—by providing continuity, stability, and access for every child who needs care.

In our model, no child is excluded because they are “too complex,” “not eligible,” or “already treated.” Every child with cancer at Cure 4 The Kids Foundation is screened for appropriate clinical trials or research opportunities, so families are aware of all available options. Participation is always voluntary, and care is never contingent on enrollment.

Financial Assistance for Pediatric Cancer Treatment

For many families, the financial impact of childhood cancer begins immediately. Jobs are disrupted. Insurance coverage changes. Costs escalate quickly and unpredictably.

At Cure 4 The Kids Foundation, those realities do not determine whether a child receives care.

Children are never denied treatment because of insurance status or ability to pay. Charity care is built into our operations so that financial hardship never becomes a barrier to medically necessary cancer care.

This commitment is not symbolic. It is embedded in how we operate, how we plan, and how we show up for families—every day.

Pediatric Cancer Care Without Research Conditions

Research and clinical trials are vital to the future of pediatric cancer care. They are an important option for many families—but they are not the right option for every child, at every moment.

At Cure 4 The Kids Foundation, care is never contingent on research participation.

Families are supported in making informed decisions without fear that declining a study—or being ineligible for one—will limit access to treatment. The child comes first. Always.

Our Promise to Nevada Families

Unconditional access is not a tagline. It is not a marketing phrase. It is a promise—one that is kept quietly, consistently, and without exception.

Every child with cancer who is referred to Cure 4 The Kids Foundation receives care. Access to treatment is never contingent on ability to pay, insurance coverage, prior treatment history, or participation in research.

This is the standard we hold ourselves to. This is the responsibility we carry. And this is why Cure 4 The Kids Foundation exists.

Frequently Asked Questions About Pediatric Cancer Care at Cure 4 The Kids Foundation

We are often asked:

Does Cure 4 The Kids Foundation accept patients without insurance?

Yes. Cure 4 The Kids Foundation never denies care based on insurance status. Charity care is built into our operational model to ensure that financial circumstances never prevent a child from receiving medically necessary cancer treatment.

Do children have to participate in clinical trials to receive treatment?

No. While we screen all patients for appropriate clinical trial opportunities and inform families of available options, participation is always voluntary. Care at Cure 4 The Kids Foundation is never contingent on enrollment in research protocols.

Can Cure 4 The Kids Foundation treat children who have already started treatment elsewhere?

Yes. We accept children at any point in their cancer journey, including those who have already begun treatment at another facility. Our open-access model ensures continuity of care regardless of treatment history.

Is Cure 4 The Kids Foundation only for Nevada residents?

While we serve as Nevada’s only pediatric cancer and rare disease treatment center, we accept referrals from families throughout the region. Our mission is to ensure that any child with cancer who is referred to us receives care.

Support Unconditional Access to Pediatric Cancer Care

Unconditional access to pediatric cancer care doesn’t happen by accident. It exists because a community chooses to care for its children and supports the systems that make that care possible.

If this approach matters to you, we invite you to learn more about Cure 4 The Kids Foundation or support our work in ways that feel right to you. Every form of support helps ensure that children with cancer can receive the care they need, close to home and without conditions.

Why the UN’s Childhood Cancer Recognition Matters for Nevada Families

Posted on December 5, 2025December 5, 2025 by Jennifer Glover

Key Takeaways:

The United Nations is poised to formally recognize childhood cancer in its Fourth High-Level Meeting on Non-Communicable Diseases—a historic first that could reshape global and local healthcare priorities.
Because the draft declaration did not pass by consensus in September 2025, it must go to a formal vote of the full UN General Assembly, where the childhood cancer language remains vulnerable to removal.
For Nevada—a state with significant pediatric subspecialty shortages—global recognition would strengthen funding pathways, research partnerships, and legislative momentum for childhood cancer and rare disease care.
Cure 4 The Kids Foundation, as a member of Childhood Cancer International (CCI), is calling on Nevada’s healthcare community, policymakers, and advocates to support retaining childhood cancer in the final declaration.

Every week at Cure 4 The Kids Foundation, a child sits across from us whose entire future depends on timely diagnosis, coordinated care, and a system strong enough to support their family through the fight of their lives. These aren’t hypothetical scenarios or distant policy discussions—they’re the reality for Nevada families navigating childhood cancer right now.

That’s why what’s happening at the United Nations matters deeply, not just in theory, but in the most practical, immediate, life-changing ways.

For the first time in history, the draft Outcome Declaration for the UN’s Fourth High-Level Meeting on Non-Communicable Diseases (NCDs) includes childhood cancer. This represents a breakthrough moment in global health policy—one that has the potential to reshape how nations prioritize, fund, and coordinate pediatric cancer care.

And it is fragile.

Understanding the Stakes: What’s Happening at the UN

The UN’s High-Level Meetings on NCDs occur approximately every 4–7 years and set the global agenda for how countries address diseases like cancer, diabetes, and cardiovascular conditions. Historically, these declarations have focused almost exclusively on adult populations, leaving childhood cancer—and the unique needs of pediatric patients—largely invisible in global health policy.

The current draft declaration changes that. For the first time, childhood cancer is explicitly named, acknowledging that children face distinct challenges that require dedicated attention, resources, and systems of care.

However, because the declaration did not achieve consensus approval during the September 2025 session, it must now proceed to a formal vote before the full UN General Assembly. Until that vote occurs—which could be scheduled at any time—the childhood cancer language remains vulnerable.

It can still be amended, weakened, or removed entirely.

Globally, childhood cancer is diagnosed in approximately 400,000 children each year. In the United States, cancer remains the leading cause of death by disease after infancy among children. Yet despite this, pediatric oncology has historically received a fraction of the research funding and policy attention given to adult cancers.

Why Nevada Cannot Afford to Lose This Moment

Nevada faces unique challenges in pediatric healthcare that make global recognition of childhood cancer particularly consequential for our state.

We have one of the lowest ratios of pediatric subspecialists per capita in the nation. In fact, according to a sobering KNPR report, “depending on where you look, the state ranks between 46th and 49th in number of pediatric doctors per capita.” Families in rural Nevada often travel hundreds of miles (including across state lines) to access specialized care, and our state has historically ranked among the lowest for children’s healthcare access and outcomes.

These aren’t failures of will—they’re structural gaps that require sustained policy attention, dedicated funding streams, and workforce development initiatives to address. Global recognition of childhood cancer as a priority area for NCDs would provide critical support for the work Nevada has already begun.

How the UN Declaration Aligns With Nevada’s Strategic Healthcare Priorities

At Cure 4 The Kids Foundation, our strategic plan—Here We Grow Again—is built around five pillars: Disruption, Radical Relationships, Innovation, Workforce Development, and Equity in Access. The inclusion of childhood cancer in the UN declaration strengthens each one.

Disruption: Building What Children Truly Need

Childhood cancer has been overlooked globally for decades because healthcare systems were structured around adult needs. The assumption that pediatric care could simply be scaled-down adult care has proven inadequate—children’s bodies, developmental stages, and long-term survivorship needs are fundamentally different.

Experts and advocates in Nevada have long rejected that model. Recognition at the UN level validates what we’ve known: children are not small adults, and their care cannot be an afterthought. This global acknowledgment creates leverage for continued investment in pediatric-specific infrastructure, protocols, and training.

Radical Relationships: Collaboration Across Borders

Strategic growth in pediatric healthcare requires bold partnerships—with universities, policymakers, health systems, and global organizations. As proud members of Childhood Cancer International (CCI), Cure 4 The Kids Foundation stands with advocates worldwide who are working to protect the childhood cancer language in this declaration.

CCI is a global network of member organizations, allies, and collaborative partners that has been instrumental in elevating childhood cancer on the global stage. Nevada’s participation in this international movement positions our state’s healthcare institutions for expanded collaboration, knowledge sharing, and partnership opportunities.

Innovation: Strengthening the Systems Behind the Care

Nevada has made significant investments in healthcare infrastructure that directly supports children with cancer and rare diseases. We’re building registries, we’re modernizing genetics infrastructure through expanded newborn screening, and developing psychosocial and behavioral health pathways that recognize the whole-family impact of pediatric illness.

Global recognition fuels these initiatives by opening doors for new research opportunities, improving data integration across systems, and attracting workforce talent to Nevada. When childhood cancer is recognized as a global priority, the funding and partnership landscape shifts accordingly.

Workforce Development: Addressing Nevada’s Most Critical Barrier

The UN declaration specifically highlights the need for a pediatric-focused NCD workforce—precisely what Nevada is fighting to build.

Through initiatives like SB165—a bill designed to create a new licensed profession called the Behavioral Health and Wellness Practitioner that also establishes a regulatory framework for this practice—and academic partnerships, telehealth expansion, and the ongoing work of the Nevada Rare Disease Advisory Council (NV-RDAC), we are actively addressing these gaps. Global recognition adds momentum and legitimacy to these efforts, helping attract federal attention and resources to Nevada’s workforce challenges.

Equity in Access: Ensuring No Child Is Left Behind

Recognition on the world stage supports the priorities most central to improving outcomes: early diagnosis, coordinated care systems, and equitable access to high-quality pediatric treatment regardless of geography or socioeconomic status.

For Nevada families—particularly those in rural areas or underserved communities—this matters enormously. When childhood cancer is prioritized globally, it strengthens the case for investments in telehealth infrastructure, transportation support, family navigation services, and the other wraparound resources that determine whether a child can actually access the care they need.

What Nevada Stands to Gain…Or Lose

If childhood cancer remains in the final UN declaration, Nevada gains:

Stronger alignment with federal and global health priorities, positioning the state favorably for grants, demonstration projects, and policy initiatives.
Increased eligibility for research funding and international partnerships that could bring new clinical trials and treatment options to Nevada families.
Reinforcement for Nevada’s legislative progress, including the work of NV-RDAC and initiatives advancing through the state legislature.
Momentum for the 2026–2028 NV-RDAC State Plan, which will guide Nevada’s approach to rare diseases and childhood cancer for years to come.
Validation for Nevada’s investments in early detection, data systems, and workforce development—demonstrating that our state is aligned with international best practices.

If the childhood cancer language is removed, this rare global opportunity disappears. The policy momentum we’ve built over the last decade becomes harder to advance. Nevada’s efforts to attract pediatric specialists, secure federal funding, and build sustainable infrastructure lose a critical source of support.

This is structural—the kind of foundational shift that determines what’s possible for the next generation of Nevada children facing cancer.

Now Nevadans Must Use Our Voice

Nevada has spent the last decade building the foundation for better pediatric cancer care. Now, as the world considers whether to formally recognize childhood cancer as a global health priority, we have both an opportunity and a responsibility to stand with the international community.

As Founder of Cure 4 The Kids Foundation and Chair of NV-RDAC, I am urging our partners, policymakers, healthcare providers, and advocates across Nevada:

This is the moment to pay attention. This is the moment to act.

Cure 4 The Kids Foundation proudly supports the global effort to retain childhood cancer in the final UN declaration. Because when the world recognizes children with cancer, it strengthens every system we are fighting to build—for Nevada, and for every child, everywhere.

How the AKAC and GKAC Acts Could Transform Pediatric Care

Posted on December 1, 2025January 12, 2026 by Jennifer Glover

Key Takeaways:

What are the AKAC and GKAC Acts? Two bipartisan federal bills working to remove systemic barriers in pediatric cancer and rare disease care by streamlining Medicaid enrollment for out-of-state specialists (AKAC) and accelerating pediatric drug development (GKAC).
Why do the AKAC and GKAC Acts matter for children with cancer and rare diseases? The AKAC Act eliminates administrative delays that prevent families from accessing specialized care across state lines, while the GKAC Act ensures children gain earlier access to innovative cancer therapies already being studied in adults.
How would the AKAC Act improve access to pediatric specialists? By creating a simplified enrollment pathway for qualified out-of-state providers already in good standing with Medicare or another state’s Medicaid program, reducing weeks of bureaucratic delays that can compromise treatment outcomes.
What changes would the GKAC Act bring to pediatric cancer research? It expands FDA authority to require earlier pediatric studies of promising combination therapies and extends the Rare Pediatric Disease Priority Review Voucher Program through 2029, incentivizing pharmaceutical companies to invest in treatments for children.
How do access and innovation work together in pediatric care? Improving provider access through AKAC means nothing without better treatments available through GKAC, while innovative therapies developed through GKAC research only help children who can actually reach qualified specialists supported by AKAC reforms.

When a family learns their child has cancer or a rare disease requiring specialized treatment unavailable locally, they face an immediate crisis. Within days, they must coordinate care with distant specialists, navigate insurance approvals, and often travel across state lines while their child’s condition progresses. At Cure 4 The Kids Foundation, we know that barriers to care aren’t always medical. Sometimes, they’re bureaucratic. And in pediatric oncology and rare disease treatment, bureaucratic delays can have devastating consequences.

The Hidden Barriers to Kids’ Healthcare Most Families Face

Two systemic issues create unnecessary obstacles for families seeking specialized pediatric care. Administrative barriers force families to wait weeks for out-of-state Medicaid provider enrollment while their child’s treatment window closes. Research lag excludes children from early-stage drug studies, meaning therapies that could save lives remain unavailable to pediatric patients for years after demonstrating promise in adults.

These issues translate directly into delayed care and fewer treatment options for kids. When a child needs a bone marrow transplant specialist in another state, Medicaid enrollment requirements can add weeks to an already compressed timeline. When a promising combination therapy shows remarkable results in adult cancer patients, children with the same disease type often wait years before that treatment becomes available in pediatric formulations or dosing protocols.

In pediatric cancer, the difference between timely care and delayed care is measured in weeks—and weeks are a luxury children do not have.

What Is the Accelerating Kids’ Access to Care Act (AKAC)?

The Accelerating Kids’ Access to Care Act addresses the administrative maze families encounter when seeking out-of-state specialized care. This bipartisan legislation creates an opt-in enrollment pathway for qualified providers already in good standing with Medicare or another state’s Medicaid program, allowing them to participate in multiple state programs without duplicating the entire credentialing process.

The AKAC Act specifically targets children with complex or rare conditions who often need to cross state lines to reach specialists with the expertise their cases require. Families in Nevada frequently travel to California, Arizona, Utah, or even farther for advanced procedures like bone marrow transplant, rare disease treatment protocols, or clinical trials. In these cases, the medical urgency is clear, but the administrative pathway is slow. Under current systems, even when a family identifies the right specialist and secures a referral, Medicaid enrollment requirements in the provider’s state can delay treatment for weeks.

How Does AKAC Remove Red Tape?

What makes AKAC particularly effective is that it reduces administrative duplication while keeping state authority over authorizations and payment rates intact. States maintain control over which providers can participate and how services are reimbursed. The legislation simply removes the redundant paperwork that forces qualified providers to complete separate, lengthy enrollment processes for each state’s Medicaid program.

We’ve seen firsthand how weeks of waiting for a provider to be enrolled can mean the difference between timely treatment and avoidable complications. In pediatric cancer and rare disease care, treatment timing directly affects outcomes. A delay measured in weeks can allow disease progression that makes subsequent treatment less effective or even impossible. The AKAC Act recognizes that children with serious illnesses cannot afford to wait while administrators process paperwork for providers who are already qualified and practicing successfully in neighboring states.

How the Give Kids a Chance Act (GKAC) Brings Innovation to Children Faster

The Give Kids a Chance Act tackles a different but equally critical barrier. Children with cancer shouldn’t have to wait years for access to innovative therapies that are already improving survival rates in adults. Current drug development pathways often study combination therapies in adult populations first, then conduct separate pediatric trials years later if companies choose to pursue pediatric indications. This sequential approach means children miss out on potentially life-saving innovations during their most critical treatment windows.

The GKAC Act expands FDA authority to mandate pediatric studies when adult data already shows promise, particularly for combination therapies. Many of the most effective cancer treatments today involve combining multiple drugs to target disease through different mechanisms. When these combinations demonstrate significant benefits in adult trials, the GKAC Act ensures that pharmaceutical companies must also study appropriate pediatric applications rather than treating pediatric development as optional.

How Does GKAC Incentivize Pharmaceutical Companies?

GKAC not only accelerates pediatric studies, it also strengthens the Rare Pediatric Disease Priority Review Voucher Program through 2029. This program incentivizes companies to invest in therapies for children with rare diseases by providing vouchers that can expedite FDA review of other drugs in their pipeline. By extending and strengthening this program, the GKAC Act makes pediatric rare disease drug development more financially viable for pharmaceutical companies, addressing the market dynamics that historically under-invest in pediatric populations.

This bill aligns perfectly with our mission to bring the most advanced, research-based treatments to Nevada families. At Cure 4 The Kids Foundation, we’ve built our clinical programs around the principle that children deserve access to cutting-edge therapies informed by the latest research. The GKAC Act helps bridge the gap between adult cancer research breakthroughs and their availability to pediatric patients, ensuring that promising innovations reach children during their treatment journey rather than years after they first needed them.

Why Federal Progress Matters for Nevada Families

The AKAC and GKAC Acts complement each other in ways that directly address challenges Nevada families face. One removes red tape that delays treatment. The other accelerates research so that better treatments reach children sooner. Together, they create a system where families can access the right specialists without bureaucratic delays and those specialists have innovative, evidence-based treatment options available.

This federal progress connects directly to our local advocacy work at Cure 4 The Kids Foundation. As we work to establish Nevada’s first in-state Pediatric Stem Cell and Bone Marrow Transplant Program, we’re addressing the same fundamental issue the AKAC Act targets—eliminating unnecessary barriers between children and specialized care. When Nevada children no longer need to travel out of state for bone marrow transplants, their families avoid the Medicaid enrollment challenges AKAC addresses. But until that program launches, AKAC will make out-of-state referrals significantly faster and less burdensome.

Similarly, as we advance outpatient treatment models and expand our clinical trial portfolio, the GKAC Act ensures that the innovative therapies we bring to Nevada reflect the latest research developments. Federal and state action work together to make comprehensive, equitable care possible. National legislation creates frameworks that support local program development, while local programs like ours demonstrate the real-world impact of improved access and innovation.

Understanding How Access and Innovation Connect

It’s tempting to view access and innovation as separate policy goals, but in pediatric specialty care, they’re inseparable. The most innovative cancer therapy provides no benefit to a child who cannot reach a qualified oncologist trained to administer it. Conversely, excellent access to specialists means little if those specialists lack effective treatment options.

The AKAC and GKAC Acts recognize this interconnection. By addressing both administrative access barriers and research development timelines, these bills create conditions where children can benefit from medical advances in real time rather than years after those advances occur.

When you’re navigating treatment for a child with a serious illness, you don’t distinguish between “access problems” and “innovation problems.” You simply want your child to see the right doctor and receive the best available treatment as soon as possible. The AKAC and GKAC Acts work together to make that straightforward goal much more achievable.

What Families and Supporters Can Do

While these bills work their way through Congress, families and advocates can take several steps to support their passage and prepare for the improvements they’ll bring. Learning more about both pieces of legislation helps build public understanding of why these specific policy changes matter. Organizations like the Coalition Against Childhood Cancer (CAC2), Children’s Cancer Cause, and the EveryLife Foundation provide resources and advocacy opportunities for those interested in supporting these federal efforts.

Sharing this message with your networks—whether through social media, conversations with local elected officials, or discussions within patient advocacy groups—helps build momentum for bipartisan healthcare improvements that directly benefit children. These bills have attracted support from both sides of the aisle because they address clear, documented problems with practical solutions.

At Cure 4 The Kids Foundation, we’ll continue working alongside Nevada families and national partners to make sure no child waits for the care or innovation they deserve. Our advocacy extends from our clinic in Las Vegas to state legislative efforts and national policy conversations, because improving outcomes for children with cancer and rare diseases requires action at every level.

Kids Can’t Wait

The timeline of childhood cancer and rare disease doesn’t align with administrative convenience or traditional drug development schedules.

The Accelerating Kids’ Access to Care Act and the Give Kids a Chance Act recognize this fundamental truth. Kids can’t wait—not for enrollment forms, not for research pipelines, not for tomorrow’s treatments. These bills represent meaningful steps toward a healthcare system that matches the urgency of pediatric illness with the speed of access and innovation children deserve.

As these pieces of legislation move forward, they carry the hopes of every family who has faced bureaucratic delays while seeking specialized care and every family who has watched their child’s treatment options limited by slow pediatric drug development. By breaking down barriers to both access and innovation, the AKAC and GKAC Acts move us closer to a system where every child can reach the right specialist and receive the most advanced care available, regardless of where they live or which state lines they need to cross for treatment.

When Research Funding Shrinks, Nevada’s Most Vulnerable Patients Pay the Price

Posted on November 14, 2025November 14, 2025 by Jennifer Glover

Key Takeaways:

Nevada receives among the lowest NIH funding in the nation—ahead of only Alaska and Wyoming—making our research ecosystem especially vulnerable to federal cuts.
Philanthropy cannot replace federal investment. Private foundations account for just 1.2% of medical research spending in the U.S., while the federal government accounts for 25%. Even extraordinary philanthropic efforts cannot backfill meaningful federal reductions.
The consequences cascade quickly: Young researchers leave the state, clinical trials close, patients lose access to cutting-edge treatments, and families return to the old Nevada reality of “pain, get on a plane.”
Nevada has made enormous progress—achieving R1 research status at both major universities, establishing the Nevada Rare Disease Advisory Council, and building partnerships that bring clinical trials home. But this ecosystem remains fragile.
Research funding determines whether Nevada continues advancing care or falls backward. For children with cancer, rare disease patients, and Nevada’s rapidly growing senior population, these aren’t budget numbers—they’re timelines for hope.

Research saves lives—plain and simple.

Every breakthrough that transformed modern medicine was sparked by research fueled largely by federal investment through the National Institutes of Health (NIH). From immunotherapy for cancer to the diagnostics that extend life for children with rare diseases, none of it would exist without the decades-long commitment of public research dollars.

But today, that lifeline is under threat.

Recent federal proposals to cut NIH funding—and delays in distributing existing grant dollars—are creating real fear among researchers, clinicians, and families across the country. Here in Nevada, where research infrastructure is still young and fragile, the impact could be far more severe.

And let me be clear: Nevada cannot afford to lose ground. Our patients cannot afford for progress to slow—even by a single year.

Nevada Depends on Research More Than Most States

Nevada receives among the lowest NIH funding in the nation—ahead of only Alaska and Wyoming. That’s not because our needs are lower; it’s because our research ecosystem is still developing.

We’ve made enormous strides:

UNR and UNLV both achieved the prestigious R1 “Very High Research Activity” classification.
State investments in research infrastructure have grown.
Nonprofits—including Cure 4 The Kids Foundation and the Lou Ruvo Center—have brought clinical trials and emerging science home to Nevada families.

But this ecosystem is still delicate, and when federal funding becomes uncertain, the consequences cascade quickly:

Young researchers leave the state or the field entirely.
Labs lose momentum because science can’t be turned on and off.
Patients lose access to cutting-edge treatments and clinical trials close to home.
Families are forced back into the old Nevada reality: “pain, get on a plane.”

For rare disease and pediatric cancer patients—who already face delayed diagnoses, limited specialists, and complex treatment pathways—these setbacks can cost not just years, but lives.

Philanthropy Can Spark Progress—But It Cannot Replace Federal Investment

Nevada is incredibly generous. From the Keep Memory Alive Rodeo to 5K fundraisers and galas statewide, philanthropy is part of the fabric of our community.

These efforts matter. They help researchers test ideas, build proof-of-concepts, and create momentum that leads to larger federal grants.

But philanthropy represents just 1.2% of medical research spending in the U.S. Industry accounts for 66%. The federal government accounts for another 25%.

This means even the most extraordinary philanthropic efforts simply cannot backfill a meaningful federal reduction. As one national expert said: “There’s no way foundations can fill the gap.”

Federal Cuts Have Real Human Consequences

Nevada researchers are already feeling the fallout of uncertainty. One UNR research associate had to leave her NIH-funded lab position when delays in grant disbursement caused the funding to lapse. She moved to a different field—one less connected to patient care and scientific advancement.

This is not an isolated story. Delays pull graduate students, early-career researchers, and skilled lab staff away from critical work. Some never return. Every time this happens, we lose knowledge, momentum, and years of potential discovery.

This brain drain is devasting for Nevada, a state battling:

Some of the fastest-growing Alzheimer’s rates
The nation’s lowest childhood cancer research participation
A severe shortage of pediatric specialists, and
One of the most underserved rare disease populations

Why It Matters for Children With Cancer and Rare Diseases

At Cure 4 The Kids Foundation, we see firsthand the power of research. NIH-supported studies have created therapies that now cure over 80 percent of childhood cancers and have begun opening pathways for rare genetic diagnoses that once had no hope.

Our partnership in national research networks—COG, NANT, and disease-specific collaborations—brings the most advanced science directly to Nevada families. The state’s Rare Disease Advisory Council (NVRDAC) is using data from our Nevada Rare Disease Needs Assessment and the Nevada Cancer & Rare Disease Registry to shape smarter policy built on real patient experiences.

None of this happens if research stalls.

Families lose access to clinical trials.
Promising treatments slow down.
Early-phase discoveries never reach the bedside.
And the children we serve wait years longer than they should for the cures they deserve.

Nevada’s Strength Is Its Willingness to Build—Now We Must Protect What We’ve Built

Nevada has never been afraid to take bold steps:

We built a statewide pediatric oncology program from scratch.
We created a Rare Disease Advisory Council when most states had none.
We expanded newborn screening and modernized genetic care.
We established the Nevada Cancer & Rare Disease Registry—the first of its kind in the state.
We invested in research universities, upgraded infrastructure, and positioned Nevada to compete nationally.

But these achievements sit on a knife’s edge. NIH cuts aren’t just numbers in a budget line—they determine whether our state continues advancing care or falls backward.

A Call to Protect Research—and the Patients Behind It

Nevada’s future in scientific discovery depends on the stability, strength, and predictability of federal research funding.

As leaders in healthcare, government, and philanthropy, we must:

1. Advocate fiercely for protecting NIH funding. Research is a public good. It belongs to every family.

2. Maintain and expand Nevada’s state investments. State support has helped us climb into national competitiveness—we cannot retreat.

3. Strengthen public-private partnerships. Philanthropy should spark innovation, not rescue it.

4. Build sustainable research career pathways in Nevada. To retain scientists, we must create stable funding environments.

5. Ensure that rare disease and pediatric cancer patients remain at the center.

Their needs are urgent. Their timelines are short. Their voices must shape our priorities.

Hope Is Still on Our Side

Nevada has a long history of proving people wrong. We innovate quickly, we collaborate deeply, and we build infrastructure at a pace most states envy.

And our researchers—at C4K, Lou Ruvo, UNLV, UNR, and across the state—are rising to the challenge with creativity, resilience, and a fierce commitment to the communities they serve.

But they cannot do it alone.

We need stable, sustained research funding so that the next breakthrough happens here—and so Nevada families don’t have to leave their state or their support systems when facing the hardest moments of their lives.

Our children, our seniors, and our rare disease community are counting on us to stand up for science.

And we must.

Because in Nevada, research isn’t optional. It’s life-saving.

Reflections from Golf 4 The Kids 2025

Posted on November 14, 2025November 14, 2025 by Jennifer Glover

Key Takeaways:

Participants ranged from patient families to caregivers to community organizations, embodying the spirit of Southern Nevada’s support for childhood cancer care
For the first time, Cure 4 The Kids is sharing founder Annette Logan-Parker’s signature Bloody Mary recipe, a tournament tradition since day one
The 2025 tournament brought together existing supporters and new partners in challenging philanthropic times, proving community strength
Volunteers and staff created personal connections with every golfer, reflecting C4K’s culture of care beyond the clinic
The tournament demonstrated Southern Nevada’s unwavering support for children battling cancer and rare diseases

Reflections from Golf 4 The Kids 2025

The sun was barely peeking over the fairways at Red Rock Country Club when I arrived at 6:00 AM on October 27th, arms loaded with Bloody Mary mix, vodka, and a handwritten note from Annette that simply read: “Keep the pour light, the mix cold, and the love heavy-handed.”

For the first time in the history of Golf 4 The Kids, I was taking over the signature Bloody Mary tent!

A Made-With-Love Morning Cocktail

If you’ve attended our Halloween Golf Tournament before, you know that Annette’s Bloody Mary tent isn’t just a refreshment stop—it’s where the day truly begins. Positioned right where golfers collect their carts, it’s become the heart of the tournament, a place where our founder personally greets every participant, thanks them for being there, and sends them off with something made with care.

The tradition started with the very first Golf 4 The Kids tournament. Back then, Annette was cooking breakfast burritos at staff meetings, arriving early to prepare meals in the clinic kitchen when our team was half its current size. Her hands-on approach to hospitality has always defined who we are as an organization. The Bloody Mary tent is an extension of that same spirit—a reminder that at Cure 4 The Kids Foundation, we put our whole hearts into everything we do.

A Day of Sunshine, Laughter, and Purpose

By the time our golfers started arriving, the course was alive with possibility. We had 21 incredible sponsors supporting the day, including 1Care Kids in their second year as presenting sponsor—a partnership we’re deeply grateful for. Nine new sponsors joined the C4K family this year, from caregivers and patient families to community organizations and heroes like the Clark County Firefighters: Local 1908. Several have already committed to making this an annual tradition.

The tournament itself was everything we’d hoped for: beautiful fall weather, activities at 16 of the 18 holes—everything from pirate-themed rum tastings to whiskey samplings and games—and volunteers who brought so much heart to the course. Many of our volunteers were C4K staff members who traded their clinic shifts for the day, and the feedback from golfers was overwhelming. They were genuinely moved by the passion and knowledge our team brought to every interaction.

The costume contest brought Halloween flair to the fairways, with our grand prize winner earning his title by golfing the entire tournament dressed as a piñata. Two lucky golfers earned shots at the $1 million and $100,000 prizes, and while neither made the 135-yard hole-in-one, everyone had fun and excitement was flying high!

But what made this year special wasn’t captured in any single moment. It was the laughter over Bloody Marys at sunrise. The parents of patients who participated, transforming their personal journeys into advocacy. The engaged conversations between Christine, our CEO, and community members who wanted to understand our mission more deeply. The way complete strangers became part of the C4K family on the golf course.

Annette’s Bloody Mary Recipe Revealed

For years, golfers have asked Annette for her Bloody Mary recipe. And for years, she’s smiled and kept it close. But traditions grow stronger when they’re shared, when they can be recreated in homes and gatherings beyond the golf course.

This year, with Annette off-site for the first time, she shared her closely-guarded recipe and trusted me to carry on the tradition. Even better, now she’s making the recipe public for the first time!

Download the recipe card and bring a little extra love from Cure 4 The Kids Foundation into your kitchen. Whether you’re hosting friends or planning your own fundraising event, this recipe carries the spirit of everything we do at C4K—made from scratch, made with care, and made for connection.

Note from Annette: This is a small-batch version of our event favorite! Rich, garden-fresh, and made with love.

Passing the Torch

Taking over the Bloody Mary tent this year meant more to me than mastering measurements and garnish placement. It represented something central to C4K’s culture: the deliberate passing of traditions, the mentoring of new leaders, and the assurance of continuity in everything we do.

That same principle guides us in the clinic every day. When Christine Tonn stepped into the CEO role, bringing her extensive background in nonprofit healthcare finance and her commitment to continuous improvement, she ensured that C4K’s mission would continue to thrive. Strong leadership is at its best when it preserves the heart of an organization while building capacity for the future.

At Cure 4 The Kids Foundation, we always invest in the next generation. We document. We train. We pass along not just the “what” but the “why” because traditions matter. Culture matters. And the kids we serve deserve an organization full of heart that’s built to last.

Here’s to Next Year!

As the event wrapped up, I thought about all the golfers who’d stopped by that morning. Some were longtime supporters who hugged me and said, “Annette would be proud.” Others were first-time participants who told me they’d be back next year, and the year after that.

The funds raised at Golf 4 The Kids are vital to advancing cures and treatment for kids with cancer and rare diseases, and on behalf of Cure 4 The Kids Foundation, I want to extend my thanks and gratitude. It’s so beautiful to see the community that forms when people gather around a shared purpose.

Thank you to every golfer, sponsor, and volunteer who made this year’s tournament unforgettable. Thank you to the Cure 4 The Kids team for getting the word out and securing so many wonderful sponsors. Thank you for showing up and for caring deeply about Nevada’s children who are fighting the toughest battles of their lives.

And thank you, Annette, for trusting me (and all of us!) with your recipe!

Here’s to good friends, great golf, and lasting traditions! Cheers to another amazing year, and to many more to come.

About the Author: Amber Williams serves as Director of Communications at Cure 4 The Kids Foundation, where she has spent over 8 years building connections between the organization and the Southern Nevada community. She is passionate about ensuring every family knows they have a place to turn when their child needs specialized care.

Nevada Rare Disease Support: Share Your Experience to Shape the Future of Care

Posted on November 12, 2025November 12, 2025 by Jennifer Glover

Key Takeaways:

Nevada’s Rare Disease Advisory Council (NV-RDAC) has launched comprehensive Patient & Family and Healthcare Provider Needs Assessments to gather critical insights about rare disease care in Nevada
An estimated 25–30 million Americans live with rare diseases, yet many families spend years searching for diagnosis and appropriate care without feeling heard by the healthcare system
The findings from both assessments will directly shape Nevada’s next Rare Disease State Plan, guiding policies and programs that reflect real patient and provider experiences
Nevada is one of 33 states with a Rare Disease Advisory Council, part of a national movement to give rare disease communities a stronger voice in state government
Every response to these assessments helps identify gaps in care coordination, access, and support systems for Nevada’s rare disease community

What Is the Nevada Rare Disease Advisory Council Doing to Support Nevada Families?

The Nevada Rare Disease Advisory Council (NV-RDAC) was formed under SB315 during the 2019 legislative session of the Nevada legislature. As an advising body, NV-RDAC provides a platform for those living in Nevada who are affected by a rare disease, giving this community a stronger voice in healthcare and state government.

Nevada is one of 33 states across the United States that has established a Rare Disease Advisory Council. The first RDAC was created in North Carolina in 2015 by advocates and families driven to make a difference. This national movement recognizes that state governments are uniquely positioned to address rare disease needs in ways that align with their population’s demographics and healthcare landscape.

NV-RDAC’s duties include:

Performing statistical and qualitative examination of rare diseases in Nevada
Increasing awareness of the burden caused by rare diseases
Identifying evidence-based strategies to prevent and control rare diseases
Evaluating systems for delivery of treatment

The council also works to increase awareness among healthcare providers of the symptoms of and care for patients with rare diseases, develops a registry of rare diseases diagnosed in Nevada, and compiles an annual report with recommendations for legislation and policy.

Through proactive engagement, the council has fostered discussions with key stakeholders, including organizations such as the National Organization for Rare Disorders (NORD), Medical Home Portal, Cure 4 The Kids Foundation, and Global Genes. A key outcome of these efforts has been the council’s close collaboration with the Nevada Department of Health and Human Services (DHHS) to streamline data collection processes.

How Common Are Rare Diseases in Nevada?

While individual rare diseases affect fewer than 200,000 people in the United States, there are over 10,000 known rare diseases. Collectively, they impact an estimated 25–30 million Americans, with approximately 50% of those affected being children. These conditions lead to significant challenges in diagnosis, treatment, and quality of life for affected individuals and their families.

In Nevada, specific statistics for the prevalence of rare diseases have not been readily available. Data collection and reporting on rare diseases can be challenging due to their rarity and the fragmented nature of healthcare systems. This gap in understanding makes it difficult for state policymakers and government officials to have an in-depth understanding of the needs of Nevada’s rare disease community.

That lack of awareness contributes to common and harmful obstacles that rare disease patients face, including delays in diagnosis, misdiagnosis, lack of treatment options, high out-of-pocket costs, and limited access to medical specialists. Many rare diseases go undiagnosed or misdiagnosed for years due to lack of awareness among healthcare providers and the rarity of these conditions.

But behind every rare disease statistic is a story—a parent searching for answers, a provider trying to help, and a system learning how to listen.

What Does It Mean When Healthcare Systems Stop Listening?

Innovation moves quickly in healthcare. New treatments emerge, advanced diagnostics become available, and digital platforms transform how we access care. But amid all that progress, one truth remains: none of it matters if people don’t feel heard.

Listening forms the foundation of trust, safety, and healing. Yet silence continues to be one of the most persistent barriers in our healthcare system. This silence happens when a patient doesn’t feel safe to speak up, when a parent is dismissed for asking questions, or when a provider notices something concerning but stays quiet because their feedback has been overlooked before.

In the world of rare disease, that silence is magnified. Families can spend years searching for answers, only to feel unheard when they finally find care. Healthcare providers, meanwhile, often work within systems that aren’t equipped to support the complexity or isolation that rare conditions bring. When patients and providers go unheard, care fragments and trust erodes.

How Has NV-RDAC Made Listening the Starting Point for Change?

18 months ago, NV-RDAC launched Nevada’s first-ever Patient & Family Needs Assessment, and the response has been powerful. The data gathered so far has already begun shaping how the council understands access, care coordination, and quality-of-life challenges for those living with rare diseases in Nevada. But more voices are needed to complete the picture. Every new response adds critical insight that helps drive meaningful change.

Now, NV-RDAC is expanding that work with the launch of its Healthcare Provider Needs Assessment, designed to capture the perspectives of those on the frontlines of rare disease care. Together, these two assessments bring every voice to the table.

The NV-RDAC surveys ask simple but powerful questions, like:

What are families struggling with?
Where do providers feel unsupported?
How can Nevada build a system where listening is as essential as lab results and diagnosis codes?

The findings from both assessments will directly shape Nevada’s next Rare Disease State Plan, guiding policies, programs, and priorities that reflect what people actually experience, not just what data alone can tell us.

How Can You Add Your Voice to Shape Nevada Rare Disease Support?

We know that change doesn’t start with policies. It starts with people speaking and others choosing to listen.

If you are a patient, family member, or caregiver living with a rare condition in Nevada, your story matters. The Patient & Family Needs Assessment gives you the opportunity to share your experiences navigating diagnosis, treatment, and ongoing care.

If you are a healthcare provider treating patients with rare or complex conditions, your perspective is equally vital. The Healthcare Provider Needs Assessment allows you to share insights about the challenges you face in providing care, gaps in resources or training, and what support would help you better serve your patients.

Your input helps the council identify where silence still exists and how to replace it with collaboration, compassion, and action.

How Has Patient Input Driven Nevada Rare Disease Legislation?

We know that change doesn’t start with policies. It starts with people speaking and others choosing to listen.

“Change doesn't start with policies. It starts with people speaking and others choosing to listen.”

Annette Logan-Parker, Board Chair at NV-RDAC and Founder of Cure 4 The Kids Foundation

The data gathered through NV-RDAC’s Patient & Family Needs Assessment has already impacted legislative action. As the founder of Cure 4 The Kids Foundation and Board Chair of NV-RDAC, I used insights from the survey to reinforce advocacy efforts during Nevada’s 2025 legislative session. The patient experiences documented through the assessment helped lawmakers understand the real-world impact of policy gaps in rare disease care.

That advocacy resulted in two landmark bills: Senate Bill 189, which established licensing for genetic counselors and recognized genetic counseling as a reimbursable medical service, and Senate Bill 348, which modernized Nevada’s newborn screening program to ensure every baby receives comprehensive testing for life-threatening conditions.

These legislative victories demonstrate how patient voices directly shape Nevada policy. When families share their experiences through the needs assessments, those stories become the foundation for systemic change. Learn more about Nevada’s 2025 rare disease legislative wins.

What NV-RDAC Has Accomplished Through Listening

Despite resource constraints, NV-RDAC has made significant progress in several key areas by prioritizing stakeholder engagement and collaborative problem-solving:

Building Nevada’s Rare Disease Data Infrastructure: NV-RDAC has initiated foundational efforts to establish a statewide rare disease registry, with particular focus on childhood cancer, sickle cell disease, and newborn screening conditions. These efforts, in collaboration with Cure 4 The Kids Foundation and DHHS, will provide Nevada with crucial data to assess the incidence, causes, and economic impact of rare diseases.

Creating Meaningful Stakeholder Engagement: The council has made stakeholder engagement a cornerstone of its efforts to address the needs of Nevada’s rare disease community. NV-RDAC has actively engaged with a broad spectrum of stakeholders, including rare disease patients, healthcare providers, advocacy groups, lawmakers, and nonprofit organizations. Through these engagements, the council has gained critical insights into the challenges faced by those living with rare diseases.

Raising Public Awareness: NV-RDAC’s successful “While You Wait” campaign and its presence on social media have significantly raised public awareness about rare diseases, supplemented by live television appearances and print media coverage of council activities.

Advocating for Policy Changes: Although NV-RDAC does not have the authority to submit bill draft requests directly, the council has successfully collaborated with legislators—from state senators to the governor—to introduce and sign into law important bills. As mentioned above, NV-RDAC informed advocacy efforts have directly resulted in the expansion of the newborn screening program, increased medical reimbursements for pediatric cancer patients on Medicaid, access to pediatric specialized care, and more.

Strengthening Healthcare Partnerships: Through partnerships with DHHS and Cure 4 The Kids Foundation, the council has improved data collection processes, particularly for childhood cancer and sickle cell cases. The upcoming development of a comprehensive childhood cancer and rare disease registry will further streamline these efforts, ensuring Nevada’s rare disease data is both accurate and efficiently managed.

When people feel safe to speak, systems become safe to trust.

Every Voice Matters in Rare Disease Advocacy

Every patient deserves to be heard. Every provider deserves to be supported. And every policymaker deserves to understand the truth directly from the people who live it.

Nevada’s rare disease community is leading that transformation, one story, one survey, one shared truth at a time. The dual needs assessments represent more than data collection. They represent a commitment to ensuring that Nevada’s rare disease policies and programs are built on the real experiences of patients, families, and the healthcare providers who care for them.

With millions of people affected by rare diseases in Nevada, the collective impact on public health, healthcare systems, and affected individuals and families is substantial. Efforts to raise awareness, improve diagnosis and treatment, and support research into rare diseases are essential for addressing the needs of those affected by these conditions.

In Nevada, the path forward begins with listening. Your participation in these assessments helps create a healthcare system where no one’s voice goes unheard, where providers have the resources and support they need, and where families can find the care and answers they deserve without years of searching in silence.

Silence costs too much, and in healthcare, listening saves lives.

Take Action Today

Patients, Families, and Caregivers: Share your experience with rare disease care in Nevada:

TAKE THE PATIENT & FAMILY NEEDS ASSESSMENT

Healthcare Providers: Help us understand how to better support you in caring for rare disease patients:

TAKE THE HEALTHCARE PROVIDER NEEDS ASSESSMENT

Your voice shapes Nevada’s future rare disease policy and support systems. The more voices we hear, the better we can serve our community.

Why Do Kids Get Cancer?

Posted on November 4, 2025November 4, 2025 by Jennifer Glover

Key Takeaways:

Childhood cancer typically results from random genetic mutations that occur during rapid cell growth and development, not from lifestyle or environmental factors.
Most childhood cancers cannot be prevented, and they’re not caused by anything parents did or didn’t do.
Genetic changes in childhood cancer are usually acquired, not inherited—less than 10% of childhood cancers are linked to inherited genetic mutations.
Children’s cancers differ fundamentally from adult cancers, as they develop in different cell types and respond differently to treatment.
Research is advancing our understanding of childhood cancer causes, leading to better treatments and improved survival rates.

When a child is diagnosed with cancer, one of the first questions families ask is “Why?” It’s a natural response to a devastating diagnosis. Understanding why children get cancer can help families process this difficult reality.

Here’s the most straightforward answer: Most childhood cancers develop because of random, unpredictable changes in the DNA of growing cells. Unlike many adult cancers, which often result from years of environmental exposure or lifestyle factors, childhood cancers typically arise from genetic mutations that occur spontaneously during the body’s rapid growth and development.

This article shares what decades of research tell us about childhood cancer causes—not to replace your child’s medical team, but to provide context for the journey ahead. Every child’s cancer is unique, and your oncology team will provide guidance specific to your child’s situation.

How Does Childhood Cancer Develop?

Every cell in the human body contains DNA, and DNA is like an instruction manual that tells cells how to grow, divide, and function. Occasionally, errors occur when cells copy this DNA during division. Think of these like typos a person might make when copying a book by hand. Researchers often use this comparison because it captures how copying errors naturally occurs even in carefully controlled processes. In children, whose cells are dividing rapidly to support growth, these copying errors can sometimes lead to cancer.

Most of the time, the body’s natural repair systems catch and fix these errors. However, when multiple specific mutations accumulate in the same cell over time, that cell can begin growing out of control—and cancer develops.

Here’s the scale we’re talking about: During normal human cell division, between 100,000 to 1,000,000 DNA replication errors can occur each time a cell divides. The body’s proofreading systems correct nearly all of them, leaving only about 1 error per 10 billion letters of genetic code as a permanent mutation.

Of the mutations that do persist, research indicates that about 66% of cancer-driving mutations across all age groups are caused by these random, unavoidable copying errors—not by inherited genetics or environmental factors.

This is why childhood cancer feels so senseless: it’s not punishment, it’s not karma, it’s not something you caused. It’s the statistical reality of copying billions of letters of genetic code millions of times during the rapid growth of childhood.

This understanding changes nothing about your child’s diagnosis, but it can change everything about how you carry it. You didn’t cause this. Embrace that knowledge so you can be fully present for the journey ahead.

Why Childhood Cancer is Different from Adult Cancer

The vast majority of cancer occurs in older adults, with over 50% of all cancers affecting people ages 70 and older. In contrast, childhood cancer is relatively rare, affecting 1 in 264 children and adolescents before age 20, and it develops for fundamentally different reasons than most adult cancers. According to the World Health Organization: “Unlike cancer in adults, most childhood cancers do not have a known cause.”

Different Cancer Types

Children typically develop cancers in different parts of the body than adults. While adults commonly develop carcinomas (cancers in tissues that line organs), children more frequently develop:

Leukemias (blood cancers)
Brain and central nervous system tumors
Lymphomas (lymphatic system cancers)
Sarcomas (bone and soft tissue cancers)
Neuroblastomas (nerve cell cancers)

For example, Wilms tumor is a type of cancer that affects the kidneys and is diagnosed on average in kids ages 3 to 4. It’s responsible for almost 5% of all childhood cancers and is specific to young children.

Different Causes

Adult cancers can develop after years or decades of exposure to risk factors like tobacco, alcohol, sun exposure, or poor diet. Childhood cancers don’t have time to develop this way—they emerge during the vulnerable period of rapid growth when cells are dividing frequently.

Different Response to Treatment

Because childhood cancers arise differently, they often respond better to treatment than adult cancers. According to the National Cancer Institute: “The cancer mortality rate—the number of deaths due to cancer per 100,000 people per year—among children and adolescents younger than 20 years declined by more than 50% from 1975 to 2022. It dropped from 5.1 per 100,000 children and adolescents in 1975 to 2.2 per 100,000 children and adolescents in 2022.”

While any cancer diagnosis is serious, children’s bodies are often more resilient and responsive to therapies, particularly when they are treated with pediatric treatment regimens.

The Role of Genetics in Childhood Cancer

It’s crucial to understand the difference between:

Acquired genetic mutations: Genetic changes that occur randomly in a child’s cells after conception. These account for the vast majority of childhood cancers and are not passed down to future generations.

Inherited genetic mutations: Genetic changes passed down from parents that increase cancer risk. These are responsible for around 10% of childhood cancers.

Conditions That Increase Risk

Certain inherited conditions do increase a child’s risk of developing cancer, including:

Li-Fraumeni syndrome
Neurofibromatosis
Down syndrome
Beckwith-Wiedemann syndrome
Fanconi anemia

However, even with these conditions, cancer is not guaranteed. Conditions like the above simply increase susceptibility.

Known Risk Factors for Childhood Cancer

Unlike adult cancers, very few external risk factors have been definitively linked to childhood cancer. Research has identified only a handful:

Radiation Exposure

High-dose radiation exposure is one of the few confirmed environmental risk factors. This includes:

Previous radiation therapy for another cancer
Exposure to environmental sources such as radon (common in basements) or building materials
Exposure to atomic bomb radiation
Certain high-dose medical imaging

Standard medical X-rays and CT scans use much lower doses, and their benefits typically outweigh potential risks. It is crucial to note that, as emphasized by the National Cancer Institute, that CT scans can provide life-saving information for diagnosing illnesses in children and the absolute cancer risks associated with CT scans are small. For every 10,000 children undergoing today’s typical CT exposure (~8 mGy), roughly 1 to 2 might develop a blood cancer due to that exposure over their lifetime.

And although radiation exposure can potentially cause childhood cancer, it’s more likely that exposure during childhood might increase a child’s risk of cancer much later in life.

Some Chemotherapy Drugs

Children who have received certain chemotherapy drugs for a previous cancer have a slightly increased risk of developing a second cancer later.

Weakened Immune System

Children with compromised immune systems—whether from inherited conditions, HIV, or immunosuppressive medications—face elevated cancer risk.

What Parents Cannot Control

This is perhaps the most important message for families: childhood cancer is almost never caused by anything parents did or didn’t do.

Decades of research has found no reliable connection between childhood cancer and:

Diet during pregnancy or childhood
Prenatal vitamins
Living near power lines
Cell phone use
Household chemicals used normally
Parenting practices
Physical activity levels

“Our hope is that every family who walks through our doors feels certain of one thing: childhood cancer is never a parent’s fault. It’s not the result of anything they did or didn’t do. When families are freed from that painful question of ‘why,’ they can redirect their energy toward what truly helps—the care, comfort, and courage their child needs.”

Dr. Joseph Lasky, Medical Director at Cure 4 The Kids Foundation

The randomness of childhood cancer can feel unfair…because it is. While this lack of control is difficult to accept, it’s important for families to release any misplaced guilt and focus instead on supporting their child and one another.

The Importance of Ongoing Research for Childhood Cancer

While we’ve made tremendous progress in treating childhood cancer, understanding its causes remains crucial for:

Developing better, more targeted therapies
Identifying children at higher risk
Potentially preventing some cases in the future
Reducing late effects of treatment

Organizations like Cure 4 The Kids Foundation and Coalition Against Childhood Cancer (CAC2) support vital research that advances our knowledge of childhood cancer biology and supports the development of new, cutting-edge treatment approaches.

Pediatric cancer research is gaining momentum with historic federal support. In a major win for childhood cancer research, the Childhood Cancer Data Initiative (CCDI) recently saw its annual budget doubled from $50 million to $100 million. This significant funding increase will accelerate efforts to collect, analyze, and share crucial data about childhood cancers, helping researchers worldwide identify patterns, understand causes, and develop more effective treatments faster. Learn more about this landmark funding increase and what it means for families.

Hope in Numbers: Childhood Cancer Survival Rates Continue to Rise

Thanks to vigorous, ongoing research, survival rates for childhood cancer have improved dramatically in recent decades. Mortality rates in children have dropped by 70%, falling from 6.3 deaths per 100,000 to just 1.9 during 2020-2022. Adolescents have seen similar progress with a 63% decline, from 7.2 to 2.7 deaths per 100,000.

The most striking improvements have been in leukemia treatment, where death rates have plummeted by 83% for children and 73% for adolescents. Today, childhood acute lymphocytic leukemia—the most common childhood cancer—achieves remission in 90–100% of cases. Remarkably, these gains came largely from refining and optimizing existing chemotherapy approaches rather than discovering entirely new drugs.

It’s worth noting that while both age groups have benefited from treatment advances, younger children have experienced greater improvements than adolescents. This gap stems from several factors, including biological differences in how tumors behave at different ages, varying rates of clinical trial participation, differences in treatment approaches, and how well patients tolerate and follow treatment protocols.

Cure 4 The Kids Foundation: Nevada’s Only Childhood Cancer and Rare Disease Treatment Center

Since our founding in 2007, Cure 4 The Kids Foundation has operated on a pioneering hybrid model that combines world-class clinical excellence with the heart of philanthropy. This means families receive the rigorous, cutting-edge treatments found in the nation’s top medical centers alongside genuine compassion and support—with one unwavering promise: no child with cancer is ever turned away, regardless of a family’s ability to pay.

As you’ve learned in this article, childhood cancer research is complex and ongoing. Every treatment advancement and improved outcome is possible because of donors who believe in our mission. Your contribution helps us provide exceptional care regardless of financial circumstances, advance critical research into childhood cancer causes and cures, and ensure every child has access to hope and healing.

Childhood Cancer Data Initiative Doubled to $100 Million

Posted on October 23, 2025January 12, 2026 by Jennifer Glover

Key Takeaways:

The Childhood Cancer Data Initiative (CCDI) budget has doubled from $50 million to $100 million annually, representing the largest single funding increase for pediatric cancer data research.
This funding will accelerate AI-powered research to improve diagnosis, treatment, and outcomes for children with cancer nationwide and in Nevada.
The initiative prioritizes data sharing across hospitals to address the challenge that no single institution sees enough cases of rare pediatric cancers.
Families maintain full control over their child’s health information while contributing to research that benefits future patients.
Cure 4 The Kids Foundation is positioned to leverage this national investment to strengthen Nevada’s pediatric cancer research infrastructure.

On September 30, 2025, the U.S. Department of Health and Human Services announced a decision that will reshape the future of pediatric cancer research: the annual budget for the Childhood Cancer Data Initiative will double from $50 million to $100 million.

For the families we serve at Cure 4 The Kids Foundation—more than 7,000 children each year facing cancer and complex medical conditions—this announcement represents not just a budget increase but a national commitment to treating childhood cancer with the urgency and innovation it demands.

Why the CCDI Funding Increase Matters

Pediatric cancer remains the leading cause of disease-related death for children in the United States. Its incidence has increased by more than 40% since 1975, yet childhood cancers remain significantly underfunded compared to adult cancers. With only around 15,000 new cases diagnosed annually across the entire country, these diseases are rare enough that no single hospital—not even the largest children’s research centers—sees enough patients to fully understand optimal treatments.

This is where the Childhood Cancer Data Initiative becomes transformational. As Dr. Anthony Letai, who was sworn in as NCI Director on September 29, 2025, stated: “I cannot think of a better way to begin my tenure at NCI than to redouble our efforts to support our youngest patients and their families facing rare leukemias and other cancers. We will not stop until childhood cancer is a thing of the past.”

What is the Childhood Cancer Data Initiative?

Established in 2019, the CCDI operates through the National Cancer Institute to collect, generate, and analyze comprehensive data on childhood, adolescent, and young adult cancers. The initiative addresses a fundamental challenge in pediatric oncology: the rarity of these diseases makes traditional research approaches inadequate.

By pooling de-identified patient data from hospitals and treatment centers nationwide, CCDI enables researchers to:

Identify patterns and treatment responses across thousands of cases rather than dozens
Understand which therapies work best for specific genetic subtypes of pediatric cancers
Reduce the time required to discover new treatment approaches
Improve long-term survivorship outcomes by tracking patients over years and decades
Focus research attention on ultra-rare pediatric cancers that previously lacked sufficient data

The initiative’s Molecular Characterization Initiative (MCI) already offers free comprehensive molecular testing for many pediatric cancers, providing immediate clinical insights for current patients while contributing de-identified results to benefit future research.

How AI Technology Accelerates Pediatric Cancer Research

The doubled funding specifically targets the integration of artificial intelligence to maximize insights from electronic health records and clinical data. President Trump’s recent executive order, “Unlocking Cures for Pediatric Cancer with Artificial Intelligence,” establishes a framework for bringing private-sector AI expertise into partnership with federal research institutions.

AI technology offers several advantages in pediatric cancer research:

Pattern Recognition at Scale: Machine learning algorithms can analyze imaging, genetic data, and treatment outcomes across thousands of cases simultaneously, identifying subtle patterns that predict treatment response or complications before they occur.
Accelerated Clinical Trial Matching: AI can quickly match children to appropriate clinical trials based on their specific tumor characteristics, potentially opening access to promising new treatments sooner.
Predictive Analytics: Advanced algorithms can help oncologists anticipate side effects, complications, or disease progression, enabling proactive rather than reactive care.
Drug Discovery: AI can analyze molecular data to identify new therapeutic targets or predict which existing medications might be effective against specific pediatric cancer subtypes.

Dr. Jay Bhattacharya, NIH Director, emphasized this potential: “By doubling down on this mission with AI, we are ensuring that state-of-the-art science is being leveraged to provide answers about these diseases that would otherwise be out of reach.”

What This Means for Nevada Children and Families

Nevada faces unique challenges in pediatric cancer care. As one of the fastest-growing states in the nation, our healthcare infrastructure must expand rapidly to serve families across vast geographic distances—from Las Vegas to Reno to rural communities throughout the state.

The CCDI funding increase creates specific opportunities for Nevada:

Strengthened Data Infrastructure: Cure 4 The Kids Foundation is working to strengthen Nevada’s pediatric cancer and rare disease data infrastructure. The CCDI’s increased budget is an investment that supports our efforts to ensure Nevada children benefit from cutting-edge research.

Access to National Networks: Increased funding can enable states like Nevada to participate meaningfully in nationwide research collaborations, ensuring kids in Nevada have access to the same quality of care and clinical trial opportunities available at major research hospitals.

Improved Rural Access: AI-powered diagnostic tools and treatment planning systems can extend specialist expertise to community hospitals and rural areas, helping even more Nevada children receive optimal care closer to home.

Enhanced Molecular Testing: Programs like the MCI provide Nevada families with free access to comprehensive genetic analysis, informing more precise treatment decisions by geneticists and doctors.

Privacy Protections and Family Control

One concern families understandably raise about data initiatives involves privacy. The CCDI maintains strict protections:

All shared research data is de-identified, meaning personal information is removed before analysis
Parents and guardians retain full control over their child’s health information
Participation in data sharing for research purposes is voluntary
Data security follows federal health information privacy standards (HIPAA)
Consent processes clearly explain how information will be used and protected

Your child’s participation in advancing research never compromises their privacy or your family’s control over medical decisions.

How Cure 4 The Kids Foundation Will Support This National Investment

At Cure 4 The Kids Foundation, we recognize that national funding creates opportunities only when organizations like ours translate policy into practice. While this federal investment flows through the National Cancer Institute’s research programs, here’s how we’re working to ensure Nevada families benefit from the advances it creates:

Building Data Systems: Cure 4 The Kids Foundation is dedicated to continuously improving Nevada’s pediatric cancer and rare disease data infrastructure, enabling our state’s children to contribute to—and benefit from—national research advances funded through initiatives like CCDI.

Expanding Research Participation: We’re working to increase Nevada children’s enrollment in clinical trials and research studies, giving local families access to promising new treatments while contributing data that helps future patients.

Provider Education: We’re training our healthcare providers on new AI-powered diagnostic and treatment planning tools as they become available, ensuring consistent implementation across our state.

Advocacy for Equity: We’re actively advocating with federal agencies and policymakers to support ongoing and increased efforts to combat childhood cancer, including ensuring that funding reaches community hospitals and underserved populations, not just major research centers.

Family Support and Education: We’re committed to helping families understand how research advances might benefit their child’s specific situation, translating complex developments into practical information for treatment decisions.

Through our Charity Care Plan, we ensure that every family receives the same research-driven, high-quality care and treatment regardless of their financial situation. As new diagnostic tools and treatment options emerge from CCDI-funded research, we look forward to making them available to our patients.

A Call to Action: Building Nevada’s Pediatric Cancer Research Future

At Cure 4 The Kids Foundation, we’re proud to support data-driven efforts like CCDI that ensure every child’s experience contributes to better care for the next patient. But we cannot do this work alone.

We invite our community—healthcare partners, policymakers, researchers, donors, and families—to join us in building a stronger future for pediatric cancer research in Nevada. Whether through participating in research studies, advocating for continued investment in childhood cancer research, or donating to a child in need every contribution matters.