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.

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.

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.

Nevada Rare Disease Legislation: NV SB189 and SB348 Explained

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

Key Takeaways:

Nevada passed two major rare disease bills in 2025: SB189 (genetic counseling licensure) and SB348 (newborn screening modernization).
SB189 establishes licensing for genetic counselors and recognizes genetic counseling as a reimbursable medical service in Nevada.
SB348 modernizes Nevada’s newborn screening program by updating the funding model and requiring separate Medicaid reimbursement.
The Nevada Rare Disease Advisory Council (NV-RDAC), chaired by Annette Logan Parker, led the advocacy efforts for both bills.
Together, these bills create a comprehensive system connecting early detection, diagnosis, and treatment for rare diseases in Nevada.
More than 30 million Americans live with rare diseases, including thousands of Nevada families who previously faced limited local resources.

What is Nevada Rare Disease Legislation?

Nevada rare disease legislation are state laws designed to improve diagnosis, treatment, and access to care for families affected by rare diseases. In 2025, Nevada made historic progress with the passage of two landmark bills: Senate Bill 189 and Senate Bill 348.

These bills represent Nevada’s commitment to building a healthcare system where early detection, affordable access, and coordinated care are standard—not luxuries. For Nevada’s rare disease community, this legislation marks a turning point in how the state supports its most medically complex patients.

Why Does Nevada Need Rare Disease Legislation?

One in ten Americans—more than 30 million people—lives with a rare disease. In Nevada, families facing rare disease diagnoses have historically encountered significant barriers: delayed diagnoses, limited treatment options, and fragmented care systems.

According to the National Organization for Rare Disorders (NORD) 2024 State Report Card, Nevada ranked in the middle tier of states for rare disease support. While not failing, Nevada had clear opportunities to lead. The challenge was building infrastructure for early detection, ensuring affordable access, and creating coordinated care pathways.

The 2025 legislative session changed that trajectory, and the impact on 2026 and beyond is profound.

What is SB189 in Nevada?

Senate Bill 189, sponsored by Senator Roberta Lange, establishes Nevada’s first licensing framework for genetic counselors. Genetic counselors are healthcare professionals who help families understand genetic test results and make informed decisions about their care.

What SB189 Does

SB189 creates professional licensure and regulation for genetic counselors in Nevada, ensuring families receive expert guidance when interpreting genetic testing results. The bill recognizes genetic counseling as a reimbursable medical service, making this specialized care accessible and affordable for Nevada families.

Before SB189, Nevada patients often had to seek genetic counseling expertise out of state. Now, licensed genetic counselors can practice locally, and their services are covered by insurance.

Why SB189 Matters

For families receiving newborn screening results or rare disease diagnoses, genetic counseling translates complex medical data into actionable answers. SB189 ensures that Nevada has the professional workforce needed to support families from diagnosis through treatment decisions—turning uncertainty into understanding.

What is SB348 in Nevada?

Senate Bill 348, sponsored by Senator Julie Pazina, modernizes Nevada’s newborn screening program. Every baby born in Nevada is tested for dozens of life-threatening genetic and metabolic conditions that are treatable when caught early.

What SB348 Does

SB348 updates Nevada’s decade-old newborn screening funding model to reflect rising costs and new technologies. The bill increases the newborn screening fee from $81 to $122 in 2025 and $150 in 2026. Critically, SB348 requires Medicaid to reimburse newborn screening separately from delivery care, ensuring hospitals and labs receive fair payment while protecting families from unexpected costs.

Why SB348 Matters

Nevada’s newborn screening program was at risk of falling behind due to outdated funding and expiring federal grants. SB348 ensures every Nevada baby receives comprehensive screening for conditions that, when detected early, can mean the difference between lifelong complications and healthy development. For rare diseases, early detection is life-saving.

How Do SB189 and SB348 Work Together?

This new Nevada rare disease legislation isn’t just about passing individual bills—it’s about creating a comprehensive system of care. SB189 and SB348 work together to connect every step of the rare disease journey, from detection to diagnosis to treatment.

Focus Area

SB189 (Genetic Counseling)

SB348 (Newborn Screening)

Early Detection

Licenses genetic counselors to interpret results

Expands and sustains newborn screening program

Access & Coverage

Recognizes counseling as a reimbursable service

Ensures Medicaid reimbursement for screening

Quality & Oversight

Strengthens lab standards through licensure

Supports state lab sustainability with updated funding

Patient Support

Builds professional workforce for ongoing care

Detects conditions at birth for immediate intervention

Together, these bills create a pathway from screening to diagnosis, connecting Nevada families with the resources they need exactly when they need them.

Who Led Nevada’s Rare Disease Legislative Efforts?

The Nevada Rare Disease Advisory Council (NV-RDAC), chaired by Annette Logan-Parker, led the advocacy efforts that resulted in SB189 and SB348. Annette, who is also the Founder and Chief Advocacy & Innovation Officer of Cure 4 The Kids Foundation, worked with legislators, public health leaders, and community advocates to ensure rare disease priorities remained central throughout the legislative session.

The NV-RDAC’s collaborative approach—balancing fiscal responsibility with compassion and policy detail with human impact—ensured that the voices of Nevada families living with rare diseases were written directly into state law.

Learn more: Annette Logan-Parker reflects on being honored with the Nevada Cancer Coalition’s Advocacy Award for her dedication and advocacy.

What’s Next for Rare Disease Care in Nevada?

Nevada’s 2025 legislative victories lay the groundwork for continued progress. Future priorities include:

Expanding Nevada’s newborn screening panel to include all 35 conditions recommended by the federal Recommended Uniform Screening Panel (RUSP)
Implementing Medicaid coverage for licensed genetic counseling services
Building an in-state Genetics and Rare Disease Center of Excellence
Reinstating automatic inflation indexing to sustain long-term lab growth

According to NORD’s latest data, Nevada now ranks among stronger-performing states in newborn screening (Grade B), step therapy protections (Grade A), and telehealth access. The state’s active RDAC continues driving measurable change.

Championing Policy That Puts Patients First

Nevada rare disease legislation demonstrates what’s possible when compassion and policy align. SB189 and SB348 don’t just represent two health bills—they represent a comprehensive system that connects hope to action and diagnosis to care.

For Nevada families affected by rare diseases, this legislation means earlier answers, better access, and a healthcare system designed to support them from day one. For advocates and policymakers, it’s proof that strategic, collaborative leadership can transform healthcare systems and create lasting change.

Nevada is no longer following national trends in rare disease care. Today, we’re proud to say our great state is creating its own roadmap, one that puts patients and families first.

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, 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.

Why Integrated Mental Health Support Matters for Nevada’s Kids

Posted on October 20, 2025October 20, 2025 by Jennifer Glover

Key Takeaways:

Integrated behavioral health combines mental health support directly into medical care, eliminating the need for families to navigate multiple systems during already challenging times.
Children with serious medical conditions are 5 times more likely to experience anxiety or depression than their healthy peers according to Frontiers in Pediatrics, making emotional support essential to healing.
Cure 4 The Kids Foundation has served over 70,000 patients with embedded psychologists and social workers as part of on-site medical care teams.
Nevada ranks 51st nationally in youth mental health according to the MHA’s State of Mental Health in America 2025 report, highlighting the critical need for innovative care models that bring behavioral health directly to where children receive medical treatment.
Families report 40% better treatment adherence after receiving psychoeducation and integrated mental health care and experience significantly reduced emergency department visits.

Every day at Cure 4 The Kids Foundation, I meet parents whose children are facing both medical and emotional battles. One common story we hear: a child undergoing chemotherapy has started struggling not just with nausea or fatigue, but with growing panic about needles, tears about missing friends’ birthday parties, and nightmares that started after their diagnosis.

A cancer diagnosis or chronic illness brings fear, isolation, anger, and grief. Parents already juggling treatment schedules and insurance calls suddenly find themselves trying to manage their child’s emotional crises alone. This is precisely why integrated behavioral health—having emotional and mental health support right where your child gets medical care—is absolutely crucial.

A whole-child, whole-family care approach is our philosophy and our promise to every family who walks through our doors. When we address emotional wellness and physical healing together, children engage more fully in their treatment and real transformations can happen.

That’s why I’m thrilled to introduce Dr. Danielle Bello, our Director of Behavioral Health at Cure 4 The Kids Foundation, as a new contributor to our blog. After a decade of transforming how we care for Nevada’s children, Dr. Bello brings invaluable insights about the intersection of medical and emotional healing.

The Challenge: When Pediatric Mental Health Care is Siloed

Dr. Bello puts it this way: Traditionally, a child receives cancer treatment at one facility, then parents must find different providers for behavioral health support—and all too often must be put on a waitlist. Travel and coordination is difficult. Insurance authorizations require separate processes. Medical records don’t always transfer seamlessly. With all these barriers, mental health support inevitably drops in priority. In the meantime, kids can grow increasingly anxious and fearful.

And as Dr. Bello explains, emotional stress not only affects a child’s quality of life but also directly impacts physical recovery. Children who are hospitalized face significantly higher risks of developing new mental health conditions within a year of their stay:

7% of hospitalized children develop anxiety, depression, or trauma-related conditions (compared to 5% of non-hospitalized children)
8% of children who spend time in the ICU develop a mental health condition
Children with non-complex chronic conditions face nearly 3 times the risk—approximately 15% develop new mental health diagnoses
Children with complex chronic diseases face the steepest odds at over 5 times the risk, meaning roughly 25% (1 in 4) will develop anxiety, depression, or trauma within a year

Studies also show that children experiencing untreated anxiety during medical treatment can have 28–61% longer hospital stays.

These statistics represent thousands of Nevada children who leave hospitals physically healing but emotionally wounded. Without integrated support from the start, a child’s medical journey can inadvertently create lasting psychological challenges.

“When medical and behavioral health teams work separately, critical information falls through the cracks. A child’s sudden medication non-compliance might stem from depression rather than defiance. Without integrated communication, these connections get missed, and children suffer. Behavioral health integration is essential for providing the comprehensive care every child deserves.”

Dr. Danielle Bello, Director of Behavioral Health at Cure 4 The Kids Foundation, PH.D., ABPP-CN

What Integrated Behavioral Health Care Looks Like at Cure 4 The Kids Foundation

Our behavioral health team—neuropsychologists, social workers, and Child Life Specialists all led by Dr. Bello—doesn’t operate in isolation. They work right on the clinic floor alongside physicians and nurse practitioners, providing brief therapeutic interventions, safety and risk screenings, and assessments of cognitive, psychological, and social needs as part of the medical visit. The medical team knows they can easily call on the behavioral health team when they encounter a concern in a patient.

In addition to in-clinic support, Dr. Bello provides neuropsychological evaluations through on-site physician referrals, assessing all areas of thinking and mood to make diagnoses and care recommendations. Unlike traditional settings where reports are simply submitted electronically, she communicates directly with physicians and nurse practitioners to discuss case nuances and provide immediate feedback. Child Life Specialists work with patients using techniques from medical play to Virtual Reality to increase a child’s understanding of their medical treatments, assist with pain management, and provide distraction. They ease patients’ fear and provide an environment that encourages play and interaction.

Additionally, social workers at Cure 4 The Kids Foundation complete intakes of new patients and frequently follow up with established patients to assist with financial and social barriers to care. Social workers complete screenings to identify family stressors and connect them with appropriate services.

Comprehensive Pediatric Care Clinics: Treating the Whole Child, Not Just the Diagnosis

A unique aspect of our integrated behavioral health care model is our comprehensive clinic visits, focused around specific diagnoses like sickle cell disease or cancer survivorship. During these extended appointments, families meet with a full team—physician, nursing, pharmacy, dental, and behavioral health—addressing the whole patient and their quality of life. Dr. Bello often meets patients before their neuropsychological evaluation during these clinics, building rapport and answering questions, then follows up afterward to check status and determine additional needs.

Our team’s coordination is supported through weekly case conferences. When a pediatric oncologist notes increasing fatigue, our neuropsychologist might recognize treatment-related cognitive changes affecting school and mood. Together, they create synchronized care plans addressing the whole child, not just their diagnosis.

The measurable benefits we’ve seen speak volumes, and published studies exploring the value of integrated behavioral health care models corroborate our findings as well:

40% improved adherence to treatment
44% reduction in emergency room visits
62% reduction in depression symptoms
Sustained improvement in anxiety symptoms
Improved family resilience

That’s why we’re proud to say that at Cure 4 The Kids Foundation, families don’t have to navigate behavioral health screening and assessment alone—our integrated team identifies mental health needs right alongside medical care. We then facilitate referrals for crisis response, hospitalization, or connection to community-based therapy services, ensuring families get the comprehensive care they need.

Overcoming Barriers to Child Mental Health Support in Nevada

Despite proven benefits, systemic challenges persist:

With only 8 child and adolescent psychiatrists per 100,000 children, Nevada faces a severe shortage of pediatric behavioral health professionals
71% of counties have no child and adolescent psychiatrists at all
Reimbursement structures often don’t adequately cover integrated services
Electronic health records and systems are frequently fragmented

Yet opportunities for transformation exist throughout our state. The Las Vegas Medical District represents a perfect ground for innovative, supportive partnerships. Pilot programs like the TANF Mental Health Pilot demonstrating cost-effectiveness could reshape insurance coverage policies. And Nevada state legislators increasingly recognize that investing in integrated care reduces long-term healthcare costs while improving outcomes, committing nearly $200 million to overhaul our state’s behavioral health care system.

Cure 4 The Kids Foundation stands at the forefront of this advocacy, working with policymakers to expand access statewide and demonstrating how integrated models can transform pediatric care.

Dr. Bello sees systemic change on the horizon: “Healthcare systems nationwide are recognizing what we’ve known for years: treating the mind and body separately is outdated medicine. Nevada has the opportunity to lead by example, showing how integrated behavioral health transforms pediatric care. The barriers are real, but they’re not insurmountable when we work together toward this common goal.”

Expanding Access to Pediatric Therapy Across Las Vegas and Beyond

At Cure 4 The Kids Foundation, our commitment to integrated care grows stronger with each family we serve, ensuring no aspect of a child’s wellbeing gets overlooked. We strongly believe that the comprehensive approach we model at our organization represents healthcare’s future.

We invite you to join this transformation. Whether through financial support, advocacy for policy change, or simply sharing this message with others, you can help ensure every Nevada child receives the integrated care they deserve.

Ready to make a difference? Donate today to support our behavioral health program at Cure 4 The Kids Foundation and help us continue building bridges between medical and emotional healing for Nevada’s children.

About the Author: Dr. Danielle Bello brings over a decade of specialized experience in pediatric neuropsychology to her role as Director of Behavioral Health at Cure 4 The Kids Foundation. A board-certified clinical neuropsychologist, she has dedicated her career to understanding how medical treatments affect children’s cognitive and emotional development, ensuring that every child receives comprehensive support for both their psychological and physical healing.

Pediatric Genetics in Nevada: Specialized and Rare Disease Care

Posted on October 16, 2025October 16, 2025 by Jennifer Glover

Key Takeaways:

Cure 4 The Kids Foundation is Nevada’s only comprehensive pediatric genetics and rare disease center, offering families access to specialized care without leaving the state.
Cure 4 The Kids Foundation now provides genetic testing that can diagnose rare conditions in as little as 5-7 days, gene therapy treatments for conditions like hemophilia B, and coordinated care across multiple pediatric specialties including oncology, hematology, rheumatology, and orthopedics.
Led by Dr. Mark Nunes, Las Vegas’s first family geneticist, the program takes a collaborative approach—testing children alongside both parents while coordinating with specialists across numerous pediatric healthcare disciplines—to provide complete genetic insights and reproductive counseling.
Families can access these services at Cure 4 The Kids Foundation through a referral from their primary care provider or pediatrician, with our 170+ member team providing support from diagnosis through treatment and beyond.

When a child faces a rare disease or genetic condition, families need medical expertise, hope, answers, and accessible care close to home. As Nevada’s premier destination for pediatric specialty care, Cure 4 The Kids Foundation recently expanded its services to include the region’s first comprehensive family genetics program.

A Revolutionary Approach to Family Genetics in Nevada

As Nevada’s first full-time practicing medical and molecular family geneticist, Cure 4 The Kids Foundation’s Dr. Mark Nunes doesn’t just focus on the affected child—he examines entire family units, testing trios of children and both parents to provide comprehensive genetic insights. Dr. Nunes brings this same comprehensive, collaborative approach to every case, combining genetic expertise with input from multiple specialists to reach accurate diagnoses.

In one of his first cases at Cure 4 The Kids Foundation, Dr. Nunes worked with a family whose fetus was diagnosed with a lethal skeletal dysplasia (a type of dwarfing condition a baby cannot survive)—and once born, this still appeared to be the case, as the newborn immediately needed to be put on a ventilator. Through x-ray analysis, advanced genetic testing, and collaboration with Cure 4 The Kids Foundation’s pediatric orthopedist Dr. David Stewart, Dr. Nunes was able to determine that the baby actually had a milder form of the condition and could survive into adulthood, completely changing the prognosis and giving the family hope where there had been despair.

The family genetics program at Cure 4 The Kids Foundation addresses three critical needs for families:

It provides medical management guidance based on specific genetic diagnoses, ensuring children receive targeted, appropriate care.
It offers reproductive counseling, helping parents understand the likelihood of future children being affected by genetic conditions.
It ends the diagnostic odyssey—that exhausting, expensive journey from specialist to specialist seeking answers for a child’s unexplained symptoms.

Cure 4 The Kids Foundation is Committed to Providing World-Class Pediatric Care—Even into Adulthood

While Cure 4 The Kids Foundation initially focused on pediatric hematology and oncology, the organization has evolved into a comprehensive medical facility for children with complex conditions. Cure 4 The Kids Foundation now houses multiple specialties under one roof, including rheumatology for autoimmune conditions, orthopedic surgery, behavioral health services, physical therapy, and more. Integration like this means families don’t have to coordinate care across multiple facilities or struggle with communication between different providers.

Our organization’s commitment also extends beyond traditional pediatric age limits. Many genetic conditions and childhood cancers require specialized knowledge that adult providers may not possess. As our medical director Dr. Joseph Lasky explains, some patients continue receiving care into early adulthood because the pediatric specialists at Cure 4 The Kids Foundation have the deepest understanding of conditions that originated in childhood. This continuity of care proves invaluable for conditions like sickle cell disease, hemophilia, and various genetic disorders that require lifelong management.

Going Above and Beyond to Serve Families Facing Rare Diseases

Perhaps nowhere is Cure 4 The Kids Foundation’s innovative spirit more evident than in our embrace of cutting-edge treatments. The team recently administered a new, FDA-approved gene therapy to a 44-year-old patient with hemophilia B, a severe bleeding disorder that starts from birth and previously required IV factor replacement treatments multiple times per week. After successful administration of this groundbreaking gene therapy treatment, the patient has maintained normal factor levels for over a year without needing any additional IV treatments—a life-changing outcome that would have seemed like science fiction just a decade ago.

Cure 4 The Kids Foundation also provides access to investigational treatments not available elsewhere in Nevada. One local family with three boys affected by Niemann-Pick Type C, a rare storage disorder characterized by an inability of the body to transport cholesterol and other lipids inside of cells, previously traveled to Los Angeles every two weeks for spinal tap treatments provided as part of a medical study. Dr. Lasky and the staff at Cure 4 The Kids Foundation were able to get that study open at our facility, granting our providers access to that same medication and protocol. Now, Dr. Lasky administers these treatments locally, allowing the boys to maintain a better quality of life while receiving therapy that significantly slows disease progression.

The Power of Collaboration in Complex Genetic Cases

Modern pediatric medicine, especially in genetics and rare diseases, requires extensive collaboration between specialists. Dr. Nunes emphasizes how critical teamwork is in reaching accurate diagnoses and developing treatment plans. For example, radiologists provide crucial clues through imaging—such as a chest x-ray revealing a missing rib or an ultrasound highlighting a kidney malformation—that help geneticists narrow down potential diagnoses from thousands of possibilities to just a few.

Cure 4 The Kids Foundation and its providers maintain close relationships with many medical facilities. For instance, Dr. Nunes works very closely with the genetic counselor and pediatric cardiologists at Children’s Heart Center of Nevada, as many genetic conditions affect the heart. Similarly, neurologists frequently collaborate on cases involving intellectual disabilities, autism spectrum disorders, and seizure disorders. All this multidisciplinary support ensures that children receive comprehensive care that addresses all aspects of their condition, not just isolated symptoms.

Navigating the Emotional Journey

Caring for children with serious medical conditions takes an emotional toll on everyone: patients, families, and medical professionals. That’s why Cure 4 The Kids Foundation has built a robust support system that includes child life specialists who help young patients and their siblings understand and cope with complex medical situations. We also have social workers who assist families in navigating the financial challenges that often accompany long-term medical care, from insurance issues to the impact on parents’ ability to work.

Dr. Nunes shared a profound insight with Denielle Chong on Beyond the Image about the emotional complexity of genetic diagnosis:

“You know, we have an interesting phenomenon that happens in genetics sometimes with this diagnostic odyssey, and that is that families have been looking for an answer and have been in this world of gray for six or seven years. All of a sudden, we give them an answer…and all of a sudden, it’s this big loss. You go from this world of gray to black and white, and it’s a grieving process for these families…It’s helpful for families to know they’re not alone and the sun will rise the next day.”

Dr. Mark Nunes, Director of Genetics, Genomics & Metabolism at Cure 4 The Kids Foundation

After enduring so much uncertainty and hope for various outcomes, a definitive diagnosis can feel like a loss, even when it provides the answers families have been looking for. The team at Cure 4 The Kids Foundation understands these complex emotions and provides support through every stage of the journey.

Accessing Care at Cure 4 The Kids Foundation

For families wondering if their child might benefit from the services and specialists at Cure 4 The Kids Foundation, the path typically begins with a conversation with their pediatrician. Primary care providers play a crucial role in identifying when a child’s symptoms or developmental patterns warrant specialty evaluation. They track growth curves, monitor developmental milestones, and can recognize when something requires deeper investigation.

Once a referral is made, our experts—currently around 170 professionals—work together to provide comprehensive evaluation and care. From the eligibility specialists who help families navigate insurance coverage to the nurses providing direct patient care to the physicians developing treatment plans, every team member contributes to Cure 4 The Kids Foundation’s mission of filling healthcare gaps in Southern Nevada.

Building a Bright Future for Pediatric Healthcare in Nevada

Looking ahead, Cure 4 The Kids Foundation continues to expand based on our community’s needs. Our leadership, including Dr. Lasky, envisions a future where Nevada families won’t need to travel out of state for specialized treatments like certain types of radiation therapy or bone marrow transplantation. We are actively building partnerships with other healthcare organizations coming to the region, including plans for collaboration with a potential new children’s hospital.

Our organization’s growth isn’t just about adding services; it’s about maintaining excellence while expanding access. As Dr. Lasky emphasizes, our focus remains on providing the highest quality care while making that care as accessible as possible to all Nevada families who need it.

At Cure 4 The Kids Foundation, providing cutting-edge pediatric medical care is just part of what we do. We provide crucial services and support rooted not only in science but in empathy, treating families as whole units, understanding the emotional and practical challenges they face, and providing comprehensive support through some of life’s most difficult journeys.

In a city known for entertainment and hospitality, Cure 4 The Kids Foundation is proud to stand as a beacon of hope for families facing the unexpected, providing world-class pediatric specialty care right here in Las Vegas.

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.

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.