Category: News

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

Posted on 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.

Clinical Studies
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.

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.

Infusion/Ambulatory Center

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.

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

Posted on 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.

Dr. Aimee Foord, Director of Benign Hematology at Cure 4 The Kids Foundation

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.

TAKE THE PATIENT & FAMILY NEEDS ASSESSMENT

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.

TAKE THE HEALTHCARE PROVIDER NEEDS ASSESSMENT

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.

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.

“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.

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.

Childhood Cancer Data Initiative Doubled to $100 Million

Posted on 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.

Oncology

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.

Oncology

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.

MAKE A DONATION TODAY

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.

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

Posted on 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.

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.

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

Posted on by Jennifer Glover

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

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

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

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

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

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

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

Posted on by David Frye

 

April 17, 2025 By Red 7 Communications

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

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

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

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

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

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

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

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

Posted on by David Frye

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

Doctor Mark Eugene Nunes

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

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

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

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

He is bringing that expertise here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NV congressional delegates to make statements by the company they keep at Trump’s speech

Posted on by David Frye

When Rep. Susie Lee, a Democrat from Nevada, attends President Donald Trump’s address to a joint session of Congress Tuesday,  she’ll be “paying close attention to what the President doesn’t say in his address, which is how kids with disabilities will suffer without special education programs while billionaires get tax breaks.” 

Lee, who routinely prides herself for her bipartisanship, is hoping to stick it to Trump by bringing along Michelle Alejandra Booth, an education advocate and mother of an autistic child.

Nevada received $97.2 million in federal funding for more than 67,000 special needs students in the last fiscal year, according to Lee, who said in a news release that Trump’s cuts “would devastate special education programs in Nevada.” 

Sen. Catherine Cortez Masto (D-NV), like Lee, is focusing on Trump’s threatened cuts to education funding and bringing Jason Shipman, principal of a high-achieving school for low-income students in Sparks, to Trump’s speech. 

“As schools across the country face the potential cuts to critical federal funding, I won’t abandon our educators,” she said in a news release. ”I’m proud to work with Nevada leaders like Principal Shipman to ensure our students have everything they need to thrive.”

Cortez Masto says she’ll be looking for Trump to “put his money where his mouth is – I want to hear real plans for how he is going to lower costs for families.” In the first month of Trump’s second term, she said in a statement, families “have seen their cost-of-living skyrocket, and new taxes on food, energy, and cars are on the horizon.”

Sen. Jacky Rosen announced Monday she’ll bring Dominic Rampa, a Las Vegas resident who has relied on Medicaid since he was a child to pay for treatments for genetic disorders, juvenile rheumatoid arthritis, and other conditions. He’ll be accompanied by his mother, Rebecca Ennis. Without Medicaid, Rampa “would lose the health care coverage he needs to live, which at a minimum comes out to around $200,000 per year,” the news release said. 

More than 350,000 children are enrolled in Medicaid/CHIP in Nevada. 

Rep. Dina Titus, a Democrat, did not respond to the Current’s request for comments.

Rep. Mark Amodei, a Republican, also did not respond.

Other Democrats, according to news reports, are planning to be accompanied by veterans and others recently severed from their federal government jobs by Elon Musk’s figurative chainsaw, the Department of Government Efficiency (DOGE).   

Unlike 2017, when Democrats viewed Trump’s electoral college victory as an aberration, and used his address to Congress as a platform to voice their resistance, 2025 presents a new challenge – how to wave the progressive flag in the face of a majority electorate that voted, with eyes wide open, for Trump. 

The president is on a mission to wreak “chaos and cruelty,” says U.S. Rep. Steven Horsford, a Democrat from Nevada. 

“A part of it is to distract us while they work on their tax giveaway scam for the rich and the billionaires. But it’s also to dismantle the very institutions – whether it’s education, health care, or our Veterans’ Affairs system – that so many people rely on,” Horsford said when asked about Trump’s endgame. “He’s about tearing it down, and he does not care, because for him, this is about doing one thing – giving tax breaks to himself, Elon Musk and the billionaire friends who were in the front row of his inauguration and to whom he has all but abdicated our federal Government.”

Last week the House of Representatives voted by a slim margin of 217-215 in favor of Trump’s budget resolution to gut government spending.

“The House Republican budget is a ‘Screw America’ plan that will devastate essential health services, including Medicaid in Nevada,” Horsford said during an interview Monday. “It not only cuts $2 trillion on the backs of working people, the most vulnerable, it increases the deficit over $4 trillion to do what? To leave us carrying the bag and give tax breaks to big corporations, tech tycoons, and billionaires. That is the Donald Trump way.” 

Billionaire wealth increased by $1.4 trillion—or $3.9 billion per day—in the U.S. alone in 2024, and 74 more people became billionaires, according to OXFAM International, a global organization dedicated to ending poverty and injustice. 

Horsford said Monday that he’ll be accompanied to Trump’s speech by Yolanda Garcia, a Las Vegas hospitality worker who earned $2.13 as a subminimum wage employee before moving to Nevada, where the practice of paying tipped earners less than non-tipped workers is illegal. 

“That is a Jim Crow-era policy from post-slavery, and 70% of those workers are women and people of color,” Horsford said, adding Garcia can “speak to how life changing it is to escape the poverty trap” of being paid a subminimum wage, a practice endured by some 6 million tip earners in 29 states. “These employers are actually skimming off of these workers by not paying them a livable wage.”

Unlike Trump’s ‘no tax on tips’ bill, which would deliver a modest savings of about $35 a week to about 60% of tipped earners, Horsford’s bill seeks to also eliminate subminimum wages.  

“I believe women and all people deserve to get paid a livable wage, and that one job should be enough,” he said, adding that employers “are actually skimming off of these workers by not paying them a livable wage.” His bill, he adds, has “guardrails so that millionaires can’t cheat the system.”  

Horsford is one of two Democrats to serve on the Department of Government Efficiency caucus, a position he says he volunteered for in order to ward off debates on cuts to Medicare, Social Security, and more recently, Medicaid.

“I chose to participate so that I could be in the room and defend my constituents from those cuts,” Horsford said. “Elon Musk is an unelected bureaucrat who is trying to get richer off of the American taxpayer, and his actions around the mass firings are illegal. The data breach, the largest in U.S. history, is illegal. And the dismantling of federal agencies, and unilaterally deciding what grants or contracts to pay or not is illegal.”

Horsford says Democrats are working “within the Congress and with groups outside to use the legal process to hold him and his hackers accountable for their illegal activity.”  He says he still has faith in the judicial system. 

As for the DOGE caucus, which has met twice, Horsford says he’ll begin the search for fraud with “Elon Musk’s (government) contracts, and corporate subsidies to Big Oil and Big Pharma.” 

Senator Rosen to bring Nevada teen reliant on Medicaid to Trump’s Congress address

Posted on by David Frye

U.S. Senator Jacky Rosen announced she will bring a Las Vegas teenager, Dominic Rampa, and his mother, Rebecca Ennis, to President Trump’s Joint Address to Congress Tuesday. Dominic, who has relied on Medicaid since childhood, requires the program to cover treatments for nine genetic disorders, including two immunodeficiencies and juvenile rheumatoid arthritis. Without Medicaid, his healthcare costs would exceed $200,000 annually.

“Since he was a young child, Dominic has relied on Medicaid to get the health care he needs to stay alive. This critical program is a lifeline for Dominic and his family, and I’m grateful to be joined by him and his mom at the Joint Address to Congress,” said Senator Rosen.

Rebecca Ennis, Dominic’s mother, emphasized the importance of Medicaid, saying, “Having a child with multiple rare diseases is very difficult. The cost is more than most people could afford, so losing Medicaid would cause my son to lose the treatments that keep him alive.”

Senator Rosen has been a vocal critic of Republican budget plans that propose cuts to Medicaid to fund tax breaks for the wealthy. She opposed a recent budget resolution that would reduce funding for programs like Medicaid and SNAP, which are vital for many Nevadans. Rosen urged President Trump to reject these legislative plans, which she argues would increase the cost of living for Americans.

Governor Joe Lombardo has expressed strong opposition to potential Medicaid cuts, warning of the severe impact on nearly 800,000 Nevadans who depend on the program. In a letter to Nevada lawmakers, Lombardo emphasized the critical role of Medicaid in supporting low-income individuals, children, seniors, and people with disabilities.

It comes after Congressional Republicans have eyed $880 billion in cuts to the committee that handles health care spending, including Medicaid. President Donald Trump and House Speaker Mike Johnson insist they won’t cut entitlement benefits, but experts say those targeted spending cuts won’t be possible without rollbacks to entitlement programs like Medicaid, which covers hundreds of thousands of people in the Silver State.

In a press conference outside the statehouse last week, state Senate Majority Leader Nicole Cannizzaro called on local congressional leaders to halt the proposed cuts. She noted that Nevada would be the third hardest-hit state in the country, with 50% of all births in the state covered by Medicaid. Cannizzaro warned that rural hospitals would be severely affected, and neonatal intensive care units (NICUs) in the state could face elimination.

C4K Welcomes Dr. Mark Nunes, Nevada’s First Full-Time Family Geneticist

Posted on by Amber Willams

January 22, 2025

LAS VEGAS – January 22, 2025 – In a continuing effort to bring essential medical specialties to the people of Nevada, Cure 4 The Kids Foundation (C4K) is proud to welcome Mark Eugene Nunes, MD, the state’s first full-time family geneticist.

As C4K’s Director of Genetics, Genomics, and Metabolism, Dr. Nunes will see families , children and adults with genetic disorders who previously were forced to travel out of state to access these highly individualized medical diagnostic and treatment services.

There are around 20,000 genes or instructions in every person determining how their body is made and functions. A problem with just one of these genes is sufficient to cause one of around 7,000 rare genetic or heritable disorders. Utilizing his decades of expertise, Dr. Nunes will assist in the recognition, evaluation, diagnosis, management, and treatment of these inherited disorders. Working closely with Genetic Counselors, Dr. Nunes helps families understand the implications of genetic test results, and the chance an inherited disorder may recur in a family. Geneticists provide resources for and teach families, their healthcare providers, and specialists about the implications of a  rare disorder. As a Genomics specialist, Dr. Nunes can help guide how an individual’s genetic profile can influence their risk and management of rare and common health conditions and is already working with the Nevada Rare Disease Advisory Council to use genomics in public health.

“This is truly a game changer for our community,” said Annette Logan-Parker, Founder and Innovation and Advocacy Officer at Cure 4 The Kids Foundation. “The expanding field of genetics and genomics offers incredible insight for our medical staff and, ultimately, our pediatric and adult patients.  Until now, these services were only available to Nevadans on a limited basis. With Dr. Nunes now part of C4K, this is a win for our current and future patients as well as for the State of Nevada.”

Dr. Nunes is board-certified in both Pediatrics and Clinical and Molecular Genetics. Most recently, he served as Director of Medical Genetics and Metabolism at Valley Children’s Hospital in Madera, California. His role included the supervision of State-sponsored prenatal genetic clinics and the creation of specialized multidisciplinary clinics focused on cardiogenetic and neurogenetic cases. Dr. Nunes helped successfully lobby the California Department of Public Health to expand non-invasive prenatal testing (NIPT) for all pregnant women in California and helped pilot prenatal whole genome sequencing (WGS).

Before Valley Children’s Hospital, Dr. Nunes was Division Chief of Medical Genetics at Kaiser Permanente in San Diego and a partner physician at Southern California Permanente Medical Group. Dr. Nunes’ first genetics job out of training was as an active-duty Pediatrician and Clinical Geneticist in the Air Force, where he also directed the USAF Molecular Diagnostic Laboratory. He helped successfully petition the Surgeons General in cases of genetic discrimination in the military, which helped inform the Genetics Information Nondiscrimination Act (GINA) of 2008.

Dr. Nunes brings a wealth of knowledge with more than two decades of experience in appointed academic roles specializing in Pediatrics and Genetics at the University of California, San Diego (UCSD), Ohio State University, Uniformed Services University of Health Sciences in Maryland, and the University of Washington. 

As a thought leader in the field of Genetics and Genomics, Dr. Nunes has shared his research and experience in multiple peer-reviewed journals including Human Genetics, American Journal of Human Genetics and Human Molecular Genetics, and the National Library of Medicine sponsored website, GeneReviews.

Dr. Nunes earned his medical degree from the F. Edward Herbert School of Medicine at Uniformed Services University of the Health Sciences in Maryland and completed his internship and residency in Pediatrics at the David Grant US Air Force Medical Center. He completed fellowships in Clinical Genetics, Molecular (DNA Laboratory) Genetics, and Teratology at the University of Washington and Child Protection and Forensic Pediatrics at Inova Fairfax Hospital for Children in Virginia.

Dr. Nunes was born in England to a U.S. Air Force airman and base Librarian and raised in Hawaii and Northern California. Nunes and his wife have been married for 25 years and are raising four children.