News Archives

NSBoME Seeks Genetic Counseling Advisory Council Representative

Posted on January 7, 2026January 7, 2026 by Jennifer Glover

Key Takeaways:

The Nevada State Board of Medical Examiners (NSBoME) is seeking a public, non-medical representative to serve on its Genetic Counseling Advisory Council
With the passage of SB189, Nevada is implementing new licensure and oversight for genetic counselors
Clinical expertise is important, but so is that of patients and other public representatives with lived experience

If You’ve Ever Said, “Patients Deserve a Seat at the Table,” This is That Seat

We say it often in healthcare conversations—sometimes in frustration, sometimes in hope:

“Patients deserve a seat at the table.”

Right now, Nevada has an open chair, and no one from the public has stepped into it yet.

The Nevada State Board of Medical Examiners is seeking a public (non-medical) representative to serve on its Genetic Counseling Advisory Council. While applications have been submitted by licensed professionals, no application has been received from someone representing the public—the very perspective this seat was created to bring forward.

How We Got Here and Why It’s Important

With the passage of SB189, Nevada is implementing new licensure and oversight for genetic counselors. These decisions will shape how genetic counseling is delivered across the state for years to come.

Genetic counseling touches some of the most personal moments in a family’s life, including:

Cancer diagnosis and treatment decisions
Rare disease identification
Newborn screening and early intervention
Predictive and preventive health planning

Policy decisions made now will influence access, quality, and patient experience long into the future.

Why the Public Voice is Essential

Clinical expertise is critical, but it is not complete on its own. Public representatives bring lived experience, community context, and accountability to advisory bodies. They ask different questions, notice different gaps, and help ensure that regulations remain grounded in real-world impact—not just theory or workflow.

This role is not about opposing medical expertise. It is about balancing it.

Who Should Consider Applying

This position is intentionally designed for someone outside the medical profession. Strong candidates may include:

Patients or parents who have navigated cancer or rare disease diagnoses
Caregivers who understand the human impact of clinical decisions
Community leaders or advocates focused on health equity
Nevadans who believe public trust is strengthened through inclusion

If you’ve ever found yourself explaining medical information, advocating for a loved one, or asking, “How will this affect families?” you are already bringing the perspective this council needs.

Why This Matters to Me

At Cure 4 The Kids Foundation, we see every day how regulatory decisions ripple into exam rooms, infusion chairs, and family kitchens. When patients and the public are included early—before policies are finalized—the result is stronger governance, better outcomes, and greater trust.

This advisory council seat is not symbolic.

It is influential.

And it is open right now.

How to Apply

Interested individuals should submit:

*A resume or CV

*A brief statement of interest

Send materials to:

Sarah A. Bradley, JD, MBA
Deputy Executive Director
Nevada State Board of Medical Examiners
bradleys@medboard.nv.gov

Applications will be reviewed later this month.

A Final Invitation

We often talk about patient-centered care. This is patient-centered governance.

As I said at the beginning, if you—or someone in your network—has ever said, “Patients deserve a seat at the table,” please understand that this is that very seat and your perspective is needed.

Please apply or help spread the word across Nevada.

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 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, 2025December 1, 2025 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.

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.

Childhood Cancer Data Initiative Doubled to $100 Million

Posted on October 23, 2025October 23, 2025 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.

AI and Childhood Cancer: What Families Need to Know About the New Executive Order

Posted on October 6, 2025November 4, 2025 by Jennifer Glover

Key Takeaways:

A new Executive Order directs federal funding and resources specifically toward using AI technology to improve pediatric cancer diagnosis, treatment, and outcomes.
The Childhood Cancer Data Initiative (CCDI) will receive an additional $50 million in annual funding for a total of $100 million per year, helping researchers identify patterns across thousands of cases nationwide.
Families should expect to see new pilot programs, research announcements, and technology partnerships at their treatment centers in the coming months.
Data privacy protections and equitable access remain top priorities as these technologies develop.
AI tools will support (not replace) your child’s oncologist, giving them better resources to personalize treatment.

Over my 30 years in pediatric oncology, I’ve watched families wrestle not only with cancer itself but with the overwhelming flood of medical terms, treatment decisions, unknowns, and policy changes that surround their child’s journey. Now, artificial intelligence in childhood cancer treatment has entered the conversation through a new Executive Order. Like the parents who sit across from our doctors every day, you might be asking: What does this really mean for my child?

As the founder and Chief Advocacy & Innovation Officer for Cure 4 The Kids Foundation, I want to break down this policy in plain language and explain why it matters for the children and families we serve.

What the Executive Order Actually Means for Pediatric Cancer Families

Here is what September 30, 2025’s Executive Order “Unlocking Cures for Pediatric Cancer with Artificial Intelligence” means in practical terms:

Direct Federal Investment: The government is prioritizing AI tools specifically for pediatric cancer. This includes doubling the Childhood Cancer Data Initiative‘s current $50 million annual funding to a total of $100 million.

National Data Coordination: Researchers will combine information from hospitals across the country, helping identify treatment patterns that work best for specific types of childhood cancers. This is especially important since pediatric cancers are rare and no single hospital sees enough cases to understand the full picture.

Accelerated Research Partnerships: Universities, children’s hospitals, and technology companies will work together to develop AI-powered solutions faster than traditional research timelines allow.

Focus on Clinical Trial Access: AI will help match children to appropriate clinical trials more quickly and accurately, potentially opening doors to new treatments sooner.

Why This Executive Order Matters for Your Child’s Cancer Treatment

While this Executive Order opens exciting doors for improving pediatric cancer care through AI technology, we’re also closely monitoring important considerations to ensure these advances truly serve every family.

The Opportunities AI Brings to Pediatric Oncology

Smarter Pattern Recognition Across Cases: When your child’s oncologist reviews their case, they’re drawing on their experience with perhaps dozens or hundreds of similar cases. AI cancer diagnosis tools for children can analyze patterns across thousands of cases nationwide, potentially identifying subtle indicators that predict treatment response or complications before they occur.

Personalized Treatment Matching: Pediatric oncology AI can help doctors analyze your child’s specific tumor characteristics against a vast database of treatment outcomes, suggesting the most promising therapy combinations based on what’s worked for similar cases.

Faster, More Accurate Diagnosis: Pediatric cancer is the leading cause of disease-related death for children between ages 1–19 in the United States. Early detection saves lives, but childhood cancers can be challenging to diagnose. AI technology can help radiologists spot concerning patterns in scans earlier and more consistently, potentially catching cancers when they’re most treatable.

The AI Challenges We’re Watching Carefully

Protecting Your Child’s Privacy: Your family’s medical information deserves the highest level of protection. While the Executive Order emphasizes privacy safeguards, we’re advocating for transparent consent processes that clearly explain how your child’s data will be used, who can access it, and how it’s protected from misuse.

Ensuring Every Child Benefits: Advanced AI tools shouldn’t be limited to major research hospitals. Cure 4 The Kids Foundation is advocating to ensure children treated at community hospitals and rural centers have equal access to pediatric AI innovations. Geography or insurance status should never determine whether a child benefits from top-quality care.

Maintaining Human Expertise: AI excels at processing data as FDA-regulated medical device software, but even the most advanced machine learning cannot replace the clinical judgment, experience, and compassion of your child’s oncology team. These tools must enhance, not diminish, the doctor-patient relationship that’s so crucial during cancer treatment.

What Changes Families Should Watch For

As this Executive Order takes effect, here’s what you might start seeing at your treatment center:

New consent forms asking permission to include your child’s de-identified data in national research databases
Pilot programs where AI assists with treatment planning or side effect prediction
Research announcements about AI-driven studies specifically focused on your child’s type of cancer
Technology partnerships between your hospital and universities or tech companies developing pediatric cancer solutions
Enhanced molecular testing through programs like the Molecular Characterization Initiative, providing free genetic analysis of tumors

If you notice these changes, don’t hesitate to ask your oncology team how they might benefit your child’s specific situation.

What is the Childhood Cancer Data Initiative (CCDI)?

The CCDI is a National Cancer Institute program that collects and shares comprehensive data on childhood, adolescent, and young adult cancers across the United States.

Why the CCDI matters for rare cancers: Childhood cancers affect around just 15,000 children in the United States annually. This means no single hospital sees enough cases to understand optimal treatments, making nationwide data sharing essential.

How the CCDI helps families:

Accelerates research discoveries by combining data from thousands of cases
Enables more precise treatments based on real-world outcomes
Expands focus on ultra-rare pediatric cancers that previously lacked research attention
Provides insights into long-term effects and survivorship

Key feature: The Molecular Characterization Initiative (MCI) offers free comprehensive molecular testing for many pediatric cancers, sharing de-identified results to benefit future patients while providing immediate insights for current treatment.

How Cure 4 The Kids Foundation is Advocating for Your Family

At Cure 4 The Kids Foundation, our focus remains simple and unchanged: We will continue to bring every possible tool to the fight against childhood cancer while making sure families feel informed and supported along the way. Every year, we care for over 7,000 children with cancer and complex medical conditions, ensuring through our Charity Care Plan that every family receives the same research-driven, high-quality care and treatment regardless of their financial situation.

This new Executive Order is promising, and that’s why we’re committed to:

Monitoring Implementation: We’re tracking how quickly and effectively these policies reach actual treatment centers, not just research institutions.
Advocating for Equity: We’re working with policymakers to ensure AI advances reach every child, regardless of their family’s income, location, or insurance coverage.
Protecting Privacy and Ethics: We’re pushing for the strongest possible data protection standards and clear, understandable consent processes for families.
Translating Complex Policies: We’ll continue breaking down technical developments into practical information families can use in treatment decisions.

A Message of Hope: What This Means for the Future

Policy changes don’t happen overnight. However, this Executive Order represents a powerful, national commitment to using some of the world’s most advanced technologies in the fight against childhood cancer.

Change takes time, but every step forward matters. The children we serve today will benefit from better diagnostic tools, more personalized treatments, and improved outcomes. The children diagnosed tomorrow will enter a system that’s learning and improving every day.

To stay updated on AI advances and how this Executive Order impacts your child’s care options, sign up for our newsletter and follow us on social media using the links below.

1Care Kids & LeapFrog Pediatric Home Care Reveal New Themed Exam Room at Cure 4 The Kids Foundation

Posted on October 6, 2025October 6, 2025 by Jennifer Glover

LAS VEGAS – October 1, 2025 – Today, Cure 4 The Kids Foundation (C4K) debuted its newest themed patient exam room – an effort to bring a bit of fun to frequent medical appointments.

The room is made possible with funding from 1Care Kids and LeapFrog Pediatric Home Care. Patients who enter the room will be enveloped by bright colors and fun animal characters including an elephant, monkey, zebra, turtle and alligator.

Themed patient exam rooms are an important part of making multiple, but necessary, medical appointments more enjoyable for patients at Cure 4 The Kids Foundation. These rooms offer patients an unexpected surprise when they walk in and are instantly surrounded by colorful, bright and inspirational images. This is especially important for patients who are seen multiple times a week in the clinic.

“Our themed exam rooms have become a favorite among our patients, many of whom look forward to experiencing each one during their visits,” said Annette Logan-Parker, Founder and Chief Innovation and Advocacy Officer at C4K. “We’re deeply grateful to 1 Care Kids and LeapFrog Pediatric Home Care for supporting our mission to bring joy and uplifting moments to children on difficult medical journeys.”

“At 1Care Kids and LeapFrog Pediatric Home Care, we believe in caring not only for children’s health, but also for their hearts, their families, and every precious moment,” said Eddie Belluomini, RN, Chief Operating Officer at 1Care Kids. “Our partnership with Cure 4 The Kids Foundation and this new themed exam room is one more way we can bring joy, encouragement and a smile to children and families when they need it most.”

More than 7,000 patients receive treatment each year at Cure 4 The Kids Foundation, Nevada’s only pediatric cancer and rare disease treatment center.

Fashion & Philanthropy’s Fantastic Night Out! Circus Couture “RE:imagined” Happening May 1 at The Theater at Virgin Hotels Las Vegas

Posted on April 17, 2025April 17, 2025 by David Frye

April 17, 2025 By Red 7 Communications

LAS VEGAS – April 15, 2025 – Southern Nevada’s premier fashion, performance, and philanthropic event, Circus Couture, returns to The Theater at Virgin Hotels Las Vegas on Thursday, May 1, 2025, in support of the courageous children receiving treatment at Southern Nevada’s only pediatric cancer and rare disease treatment center, Cure 4 The Kids Foundation (C4K).

Circus Couture RE:imagined – presented by United Healthcare – is an entertaining and immersive event that honors the triumphs and challenges faced by the brave warriors and families served by C4K. This year, the audience will be transported through the elements – fire, water, earth, and air – to artistically illustrate the transformation patients experience as part of their challenging health journeys.

“Without a doubt, this is one of the best nights to experience in Las Vegas,” said Annette Logan-Parker, Founder and Chief Innovation and Advocacy Officer at C4K. “To see the artists, technicians, and fashion designers put their heart and soul into creating this special night supporting our patients and our organization is an inspiration to all of us.”

From its beginning in 2010, Circus Couture has featured fantastical, inventive, and often avant-garde designs created by local fashion designers, many of whom work as wardrobe professionals for well-known Las Vegas production shows. Circus Couture RE:imagined gives the designers an opportunity they often don’t have in their work —the ability to craft their own designs and present them to the public.

For nearly 20 years, the proceeds from Circus Couture have tremendously impacted C4K’s ability to provide new and innovative services to the community. Each year, more than 7,000 unique patients receive treatment at the clinic for pediatric cancer, rare diseases, bleeding disorders, and rheumatological and genetic conditions. C4K’s Charity Care Plan ensures that those without medical insurance or the financial means to pay for services receive the same high-quality, research-driven treatment.

This year, Circus Couture RE:imagined will honor two outstanding individuals who have consistently supported C4K and whose efforts have helped expand community services. Farhan and Ellie Naqvi – Naqvi Injury Law – are being recognized as the 2025 Community Partner of the Year. Since 2019, Farhan Naqvi has been a C4K Board of Directors member. In addition to its long history of financial support for the organization, Naqvi Injury Law recently partnered with the Vegas Golden Knights, allowing hats designed by C4K patients to be sold at the VGK team store, with proceeds going to C4K.

Doors for Circus Couture RE:imagined open at 6 p.m. for the silent auction and a special wine tasting presented by Allegretto Vineyard Resort of Paso Robles, California. The dinner and show begin at 7 p.m. A limited number of general admission tickets are available for $35 at cure4thekids.org but do not include dinner.

Cure 4 The Kids strengthens pediatric care in Nevada with new geneticist

Posted on March 12, 2025March 12, 2025 by David Frye

By Grace Da Rocha (contact)
Saturday, March 8, 2025 | 2 a.m.

Doctor Mark Eugene Nunes

Dr. Mark Nunes, a family geneticist who treats those at risk for genetic disorders or cancers, feels right at home in his new position in Las Vegas.

Nunes, who recently joined Cure 4 The Kids Foundation and is believed to be the first full-time geneticist in Nevada, will fill a void in the local medical community, his colleagues said.

“This is truly a game-changer for our community,” said Annette Logan-Parker, founder and chief innovation and advocacy officer at the foundation. “The rapidly advancing fields of genetics and genomics offer remarkable insights that will enhance our ability to provide individualized care for our pediatric and adult patients.”

Nunes’ more than two decades in the profession have taken him to Washington, Virginia, Ohio and California — where he most recently served as director of medical genetics and metabolism at Valley Children’s Hospital in Madera, Calif., overseeing state-sponsored prenatal genetic clinics and the creation of specialized multidisciplinary clinics focused on the genetic causes of cardiovascular and neurological conditions.

He is bringing that expertise here.

“(Genetics) is a fantastic specialty,” Nunes said. “It’s a little bit psychiatric; it’s a little bit interpreting weird genetic language into something that families and patients are able to understand; it’s a little bit of social work; it’s a little bit of cutting-edge therapy and treatment and being aware of what the new developments are.”

Nunes said he would help families, children and adults with genetic disorders who were previously forced to travel out of state for medical diagnosis and treatment services.

There are over 7,000 known rare diseases, which are defined as conditions affecting fewer than 200,000 individuals in the United States, according to the Nevada Rare Disease Advisory Council. An estimated 25 million to 30 million Americans live with a rare disease, with around 50% of them being children who could later experience challenges in diagnosis, treatment and quality of life for themselves and their families.

In Nevada, there’s no readily available data on the prevalence of rare diseases, but the Nevada Rare Disease Advisory Council has begun efforts to gather in-state data on these conditions.

Cure 4 the Kids Foundation — headquartered in Las Vegas on the Roseman University of Health Sciences campus — was founded in 2007 as a nonprofit health care facility treating and studying children with cancers and rare diseases.

The Nevada Rare Disease Advisory Council said treatment for rare diseases “can impose a substantial financial burden on individuals, families and health care systems,” creating a barrier for people to even receive care.

Dr. Joseph Lasky III, a medical director at Cure 4 the Kids, explained that the foundation had already been serving and caring for patients with genetic disorders when he started working with the organization in 2017. But there was never an in-house geneticist to guide patients on the management of their disease.

One family that Lasky is caring for frequently traveled from Las Vegas to Los Angeles for diagnostic testing and spinal tap treatments on their three sons, who live with Niemann-Pick disease Type C, a rare progressive genetic disorder where the body cannot transport cholesterol and other fatty substances inside of cells.

Before hiring Nunes, the organization was regularly relying on Dr. Nicola Longo from Utah, who still makes appearances at Cure 4 the Kids Foundation.

The waitlist for families seeking guidance on treatment from Longo soon went from six months to a year, and it’s been “continuously growing” ever since, Lasky said.

The waitlist wasn’t serving the community well, Cure 4 the Kids reasoned, and that became one of the main drivers for hiring an in-house family geneticist.

“With Dr. Nunes part of the Cure 4 the Kids Foundation team, these services are finally accessible to Nevadans on a full-time basis,” Logan-Parker said. “This is a significant win not only for our patients but also for the health care landscape of Nevada.”

Nunes hopes to embed himself within the medical community in the state, he said. In a constantly advancing field like genetics, having a group to discuss advancements, patient care and other important topics is crucial for learning.

Connecting the genetics community in Nevada could bring even more advancements to the field, allowing the state to “leapfrog” in medical infrastructure to treat those with rare conditions, he added.

Nunes wants to implement strategies for reaching patients in rural areas, and push for the licensure of genetic counselors — health care professionals who use family history to assess an individual’s risk for inherited conditions.

Lasky and Logan-Parker are confident that Nunes’ presence here will not only be a boon for Cure 4 the Kids Foundation and its patients, but the state as a whole.

“Since the population has really exploded here, we’re just simply getting more families and bigger communities here all the time, and so the need is that much greater,” Lasky said. “Having Nunes here now is just gonna make communication and the care of these families just so much better. He’s very passionate for the care of both children and adults with these diseases, and I think it totally fits with our mission to provide the best care for these families.”