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.

Summerlin Hospital Announces New Pediatric Hematology/Oncology Unit

Posted on April 5, 2019June 13, 2024 by admin

While our greatest hope is that a child never requires hospitalization, it does become necessary at times for some patients. Earlier this year, Summerlin Hospital dedicated its new Pediatric Oncology Unit and our own Chief Medical Officer, Dr. Alan Ikeda and Cure 4 The Kids Foundation CEO Annette Logan-Parker helped to cut the ribbon!

This was also the perfect opportunity for us to catch up with Dr. Alan to find out more about Summerlin Hospital’s new unit and his new interim position.

Cure 4 The Kids Foundation: Tell us about the new Pediatric Hematology / Oncology Unit.

Dr. Alan: The unit is important because it is designed to provide a safe environment for the special population of children whom we treat. It also allows for a nurturing environment with consistent exposure to the special circumstances that our population faces. This, in turn, fosters the unit staff to become specialized in their skills to be proficient in the care of Pediatric Hematology/ Oncology patients.

Cure 4 The Kids Foundation: We just learned you accepted an interim position at Summerlin Hospital?

Dr. Alan: I accepted the position of Interim Chair of Pediatrics at Summerlin Hospital. In this position, I will provide oversight of the various Pediatric programs at Summerlin Hospital, Pediatrics, Pediatric Hematology/Oncology, Neonatal Intensive Care Unit, Pediatric Intensive Care Unit, Labor and Delivery, and the Pediatric Emergency Room. There are many great leaders in each of the divisions, as well as administrators, which makes the position a lot easier. We hope to continue to build on the current program to bring more cutting edge medical technology to our city and state.

Cure 4 The Kids Foundation: That sounds great for our community, but does this mean you are planning to leave Cure 4 The Kids Foundation?

Dr. Alan: This does NOT mean I am leaving. By taking this position, I believe it allows for better collaborations between Cure 4 The Kids Foundation, Summerlin Hospital and health practices in the community. So I think it’s good news for our patients.

Thanks Dr. Alan!

(Pictured: L to R, Robert Freymuller, CEO Summerlin Hospital, Kathryn Beardshaw, RN, Pediatric Manager, Summerlin Hospital, Catherine Tonn, CFO, Cure 4 The Kids Foundation, Alan Ikeda, M.D., Chief Medical Officer, Cure 4 The Kids Foundation, Annette Logan-Parker, President & CEO, Cure 4 The Kids Foundation)

Gwen Stefani Visits Cure 4 The Kids Foundation!

Posted on March 16, 2019June 13, 2024 by admin

Thanks to the efforts of many people who worked behind the scenes to make it happen, we had the incredible honor to welcome Gwen Stefani to Cure 4 The Kids Foundation on Thursday, March 14, 2019. Ms. Stefani helped us officially dedicate our new location in the One Breakthrough Way building by participating in our ribbon cutting event.

But the multi-Platinum recording artist also came to see the special themed patient exam room inspired in her honor. Stefani wanted to do what she could to help provide some joy and hope –and most of all, fun– to children as they attend medical appointments that are part of the treatment for childhood cancer and other conditions. We all agreed the best way to do that was to give one of our exam rooms a total makeover with help from Stefani and Las Vegas artist Juan Muniz who created the incredible wall illustrations. (Photos by Tonya Harvey)

When Gwen Stefani announced her Las Vegas residency at the Zappos Theater inside Planet Hollywood Hotel & Casino, she also announced that she would donate $1 from every ticket sold to her Las Vegas performances to Cure 4 The Kids Foundation. So far, the donation has exceeded $50,000 and is being set aside to help fund a projected $2 million dollar expansion of the clinic which will include additional patient exam rooms, a dedicated area for research and some new services benefiting our patients.

As you might expect, Gwen’s visit to the clinic attracted a fair amount of attention!

Fox 5 Vegas

Entertainment Tonight

VegasNews

Extra

Golf 4 The Kids Raises $70,000; Will Help Provide Treatment to Children Battling Cancer

Posted on May 15, 2018June 13, 2024 by admin

Our mission to never turn a child away from treatment for financial reasons is something we feel strongly about. But that guarantee can also be expensive. Our Charity Care Program allows us to treat patients without medical insurance or without the ability to pay for treatment. One of the fundraisers that directly supports the Charity Care Program is Golf 4 The Kids, and this year our tournament was exceedingly successful!

More than $70,000 was raised through the generous support of golfers, corporate sponsors and others who donated to the cause. Our sincere thanks and we hope to see you for our 2019 event!