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

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

Key Takeaways:

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

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

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

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

What Is the Golden Hour in Pediatric Oncology?

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

What is Febrile Neutropenia?

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

Where We Started

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

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

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

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

Why Outpatient Specialty Centers Can Move Faster

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

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

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

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

How Our Team Cut Time to Antibiotics in Half

This is the part that makes me proud.

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

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

And then they fixed them. One by one.

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

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

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

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

Starting Baseline

85 minutes

2025 Average

57 minutes

December 2025

33 minutes

National Benchmark

60 minutes

National Pediatric ED Range

55–90+ minutes

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

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

Why I’m Sharing This

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

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

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

To Our Families

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

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

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

To the Cure 4 The Kids Foundation Team

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

This is near the top.

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

That’s the C4K Way. And you lived it.

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

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

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

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

How the AKAC and GKAC Acts Could Transform Pediatric Care

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

Key Takeaways:

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

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

The Hidden Barriers to Kids’ Healthcare Most Families Face

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

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

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

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

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

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

How Does AKAC Remove Red Tape?

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

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

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

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

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

How Does GKAC Incentivize Pharmaceutical Companies?

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

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

Why Federal Progress Matters for Nevada Families

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

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

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

Understanding How Access and Innovation Connect

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

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

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

What Families and Supporters Can Do

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

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

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

Kids Can’t Wait

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

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

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

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

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

Key Takeaways:

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

Research saves lives—plain and simple.

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

But today, that lifeline is under threat.

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

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

Nevada Depends on Research More Than Most States

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

We’ve made enormous strides:

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

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

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

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

Philanthropy Can Spark Progress—But It Cannot Replace Federal Investment

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

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

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

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

Federal Cuts Have Real Human Consequences

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

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

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

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

Why It Matters for Children With Cancer and Rare Diseases

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

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

None of this happens if research stalls.

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

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

Nevada has never been afraid to take bold steps:

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

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

A Call to Protect Research—and the Patients Behind It

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

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

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

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

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

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

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

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

Hope Is Still on Our Side

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

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

But they cannot do it alone.

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

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

And we must.

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

Reflections from Golf 4 The Kids 2025

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

Key Takeaways:

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

Reflections from Golf 4 The Kids 2025

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

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

A Made-With-Love Morning Cocktail

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

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

A Day of Sunshine, Laughter, and Purpose

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

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

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

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

Annette’s Bloody Mary Recipe Revealed

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

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

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

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

Passing the Torch

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

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

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

Here’s to Next Year!

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

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

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

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

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

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

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

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

Key Takeaways:

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

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

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

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

NV-RDAC’s duties include:

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

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

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

How Common Are Rare Diseases in Nevada?

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

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

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

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

What Does It Mean When Healthcare Systems Stop Listening?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How Has Patient Input Driven Nevada Rare Disease Legislation?

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

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

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

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

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

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

What NV-RDAC Has Accomplished Through Listening

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

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

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

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

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

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

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

Every Voice Matters in Rare Disease Advocacy

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

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

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

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

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

Take Action Today

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

TAKE THE PATIENT & FAMILY NEEDS ASSESSMENT

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

TAKE THE HEALTHCARE PROVIDER NEEDS ASSESSMENT

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

Nevada Rare Disease Legislation: NV SB189 and SB348 Explained

Posted on November 6, 2025January 12, 2026 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!