Category: Blog

Childhood Cancer Data Initiative Doubled to $100 Million

Posted on by Jennifer Glover

Key Takeaways:

  • The Childhood Cancer Data Initiative (CCDI) budget has doubled from $50 million to $100 million annually, representing the largest single funding increase for pediatric cancer data research.
  • This funding will accelerate AI-powered research to improve diagnosis, treatment, and outcomes for children with cancer nationwide and in Nevada.
  • The initiative prioritizes data sharing across hospitals to address the challenge that no single institution sees enough cases of rare pediatric cancers.
  • Families maintain full control over their child’s health information while contributing to research that benefits future patients.
  • Cure 4 The Kids Foundation is positioned to leverage this national investment to strengthen Nevada’s pediatric cancer research infrastructure.

On September 30, 2025, the U.S. Department of Health and Human Services announced a decision that will reshape the future of pediatric cancer research: the annual budget for the Childhood Cancer Data Initiative will double from $50 million to $100 million.

For the families we serve at Cure 4 The Kids Foundation—more than 7,000 children each year facing cancer and complex medical conditions—this announcement represents not just a budget increase but a national commitment to treating childhood cancer with the urgency and innovation it demands.

Oncology

Why the CCDI Funding Increase Matters

Pediatric cancer remains the leading cause of disease-related death for children in the United States. Its incidence has increased by more than 40% since 1975, yet childhood cancers remain significantly underfunded compared to adult cancers. With only around 15,000 new cases diagnosed annually across the entire country, these diseases are rare enough that no single hospital—not even the largest children’s research centers—sees enough patients to fully understand optimal treatments.

This is where the Childhood Cancer Data Initiative becomes transformational. As Dr. Anthony Letai, who was sworn in as NCI Director on September 29, 2025, stated: “I cannot think of a better way to begin my tenure at NCI than to redouble our efforts to support our youngest patients and their families facing rare leukemias and other cancers. We will not stop until childhood cancer is a thing of the past.”

What is the Childhood Cancer Data Initiative?

Established in 2019, the CCDI operates through the National Cancer Institute to collect, generate, and analyze comprehensive data on childhood, adolescent, and young adult cancers. The initiative addresses a fundamental challenge in pediatric oncology: the rarity of these diseases makes traditional research approaches inadequate.

By pooling de-identified patient data from hospitals and treatment centers nationwide, CCDI enables researchers to:

  • Identify patterns and treatment responses across thousands of cases rather than dozens
  • Understand which therapies work best for specific genetic subtypes of pediatric cancers
  • Reduce the time required to discover new treatment approaches
  • Improve long-term survivorship outcomes by tracking patients over years and decades
  • Focus research attention on ultra-rare pediatric cancers that previously lacked sufficient data

The initiative’s Molecular Characterization Initiative (MCI) already offers free comprehensive molecular testing for many pediatric cancers, providing immediate clinical insights for current patients while contributing de-identified results to benefit future research.

Oncology

How AI Technology Accelerates Pediatric Cancer Research

The doubled funding specifically targets the integration of artificial intelligence to maximize insights from electronic health records and clinical data. President Trump’s recent executive order, “Unlocking Cures for Pediatric Cancer with Artificial Intelligence,” establishes a framework for bringing private-sector AI expertise into partnership with federal research institutions.

AI technology offers several advantages in pediatric cancer research:

  • Pattern Recognition at Scale: Machine learning algorithms can analyze imaging, genetic data, and treatment outcomes across thousands of cases simultaneously, identifying subtle patterns that predict treatment response or complications before they occur.
  • Accelerated Clinical Trial Matching: AI can quickly match children to appropriate clinical trials based on their specific tumor characteristics, potentially opening access to promising new treatments sooner.
  • Predictive Analytics: Advanced algorithms can help oncologists anticipate side effects, complications, or disease progression, enabling proactive rather than reactive care.
  • Drug Discovery: AI can analyze molecular data to identify new therapeutic targets or predict which existing medications might be effective against specific pediatric cancer subtypes.

Dr. Jay Bhattacharya, NIH Director, emphasized this potential: “By doubling down on this mission with AI, we are ensuring that state-of-the-art science is being leveraged to provide answers about these diseases that would otherwise be out of reach.”

What This Means for Nevada Children and Families

Nevada faces unique challenges in pediatric cancer care. As one of the fastest-growing states in the nation, our healthcare infrastructure must expand rapidly to serve families across vast geographic distances—from Las Vegas to Reno to rural communities throughout the state.

The CCDI funding increase creates specific opportunities for Nevada:

Strengthened Data Infrastructure: Cure 4 The Kids Foundation is working to strengthen Nevada’s pediatric cancer and rare disease data infrastructure. The CCDI’s increased budget is an investment that supports our efforts to ensure Nevada children benefit from cutting-edge research.

Access to National Networks: Increased funding can enable states like Nevada to participate meaningfully in nationwide research collaborations, ensuring kids in Nevada have access to the same quality of care and clinical trial opportunities available at major research hospitals.

Improved Rural Access: AI-powered diagnostic tools and treatment planning systems can extend specialist expertise to community hospitals and rural areas, helping even more Nevada children receive optimal care closer to home.

Enhanced Molecular Testing: Programs like the MCI provide Nevada families with free access to comprehensive genetic analysis, informing more precise treatment decisions by geneticists and doctors.

Privacy Protections and Family Control

One concern families understandably raise about data initiatives involves privacy. The CCDI maintains strict protections:

  • All shared research data is de-identified, meaning personal information is removed before analysis
  • Parents and guardians retain full control over their child’s health information
  • Participation in data sharing for research purposes is voluntary
  • Data security follows federal health information privacy standards (HIPAA)
  • Consent processes clearly explain how information will be used and protected

Your child’s participation in advancing research never compromises their privacy or your family’s control over medical decisions.

How Cure 4 The Kids Foundation Will Support This National Investment

At Cure 4 The Kids Foundation, we recognize that national funding creates opportunities only when organizations like ours translate policy into practice. While this federal investment flows through the National Cancer Institute’s research programs, here’s how we’re working to ensure Nevada families benefit from the advances it creates:

Building Data Systems: Cure 4 The Kids Foundation is dedicated to continuously improving Nevada’s pediatric cancer and rare disease data infrastructure, enabling our state’s children to contribute to—and benefit from—national research advances funded through initiatives like CCDI.

Expanding Research Participation: We’re working to increase Nevada children’s enrollment in clinical trials and research studies, giving local families access to promising new treatments while contributing data that helps future patients.

Provider Education: We’re training our healthcare providers on new AI-powered diagnostic and treatment planning tools as they become available, ensuring consistent implementation across our state.

Advocacy for Equity: We’re actively advocating with federal agencies and policymakers to support ongoing and increased efforts to combat childhood cancer, including ensuring that funding reaches community hospitals and underserved populations, not just major research centers.

Family Support and Education: We’re committed to helping families understand how research advances might benefit their child’s specific situation, translating complex developments into practical information for treatment decisions.

Through our Charity Care Plan, we ensure that every family receives the same research-driven, high-quality care and treatment regardless of their financial situation. As new diagnostic tools and treatment options emerge from CCDI-funded research, we look forward to making them available to our patients.

A Call to Action: Building Nevada’s Pediatric Cancer Research Future

At Cure 4 The Kids Foundation, we’re proud to support data-driven efforts like CCDI that ensure every child’s experience contributes to better care for the next patient. But we cannot do this work alone.

We invite our community—healthcare partners, policymakers, researchers, donors, and families—to join us in building a stronger future for pediatric cancer research in Nevada. Whether through participating in research studies, advocating for continued investment in childhood cancer research, or donating to a child in need every contribution matters.

MAKE A DONATION TODAY

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

Why Integrated Mental Health Support Matters for Nevada’s Kids

Posted on by Jennifer Glover

Key Takeaways:

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

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

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

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

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

Dr. Bello, Director of Behavioral Health at Cure 4 The Kids Foundation
Dr. Bello, Director of Behavioral Health at Cure 4 The Kids Foundaiton

The Challenge: When Pediatric Mental Health Care is Siloed

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

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

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

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

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

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

Dr. Danielle Bello, Director of Behavioral Health at Cure 4 The Kids Foundation, PH.D., ABPP-CN
Sue Waltermeyer with a patient
Sue Waltermeyer, Child Life Specialist at Cure 4 The Kids Foundation

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

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

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

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

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

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

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

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

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

Pediatric Palliative Care

Overcoming Barriers to Child Mental Health Support in Nevada

Despite proven benefits, systemic challenges persist:

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

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

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

Expanding Access to Pediatric Therapy Across Las Vegas and Beyond

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

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

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

About the Author: 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.

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

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

Posted on by Jennifer Glover

Key Takeaways:

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

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

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

What the Executive Order Actually Means for Pediatric Cancer Families

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

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

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

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

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

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

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

The Opportunities AI Brings to Pediatric Oncology

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

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

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

The AI Challenges We’re Watching Carefully

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

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

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

What Changes Families Should Watch For

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

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

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

What is the Childhood Cancer Data Initiative (CCDI)? 

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

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

How the CCDI helps families:

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

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

How Cure 4 The Kids Foundation is Advocating for Your Family

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

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

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

A Message of Hope: What This Means for the Future

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

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

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

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

UFC helps Las Vegas cancer facility by creating youth training room

Posted on by David Frye

by: Logan Reever
Posted: Mar 6, 2025 / 10:48 PM PST
Updated: Mar 6, 2025 / 11:29 PM PST

LAS VEGAS (KLAS) — Fighting is a full-time job, whether you’re in the UFC or battling cancer.

This makes one room in the Cure 4 The Kids Foundation facility a vital part of the fight to come.

“It reminds them of being a superhero, being in the gym,” Physical therapist Katie Bremer said. “We see them as a superhero because they’re fighting the real fight.”

This is the first youth training facility the UFC has helped put together and the only one in the country. Former fighter Forrest Griffin was a large part of making it happen.

“It does help us put our struggle in perspective you know,” Griffin said. “There are more important things than a fight. These kids, and I don’t want to sound overdramatic, but their lives are on the line here.”

Tomier Asfar is a former patient who battled HLH and leukemia. He fought through and was able to ring the bell.

As someone who knows the importance of inspiration during this difficult time, he saw how this means the world to the kids.

“The fact that they come in here and help us, I think it’s amazing, and I think it makes us forget about what our issues are,” Asfar said.

The fight is far from over, but neither is the fun.

Whether it is pushup contests with a UFC legend or simply playing catch with their physical therapists, this room and these memories signify the ability to push through.

“When they make it through this, they’re going to be so strong. I like to say they’re going to be bulletproof as they get older. For us and all the UFC fighters, we really take inspiration our of it,” Griffin said.

Hemophilia Patient Receives FDA Approved Gene Therapy Treatment

Posted on by David Frye
Members of the Cure 4 The Kids Foundation medical team completed Nevada’s first successful gene therapy IV infusion for a hemophilia B patient.

July 31,2024 

Cure 4 The Kids Foundation (C4K) announced it has completed Nevada’s first successful infusion of Hemgenix®, a gene therapy option for adult patients with hemophilia B — a genetic bleeding disorder in which people do not produce a protein needed to create blood clots.

Depending on severity, a hemophilia B patient can require multiple infusions of factor IX on a weekly basis to prevent a bleed. However, after the one-time Hemgenix® infusion, the gene therapy is expected to enable the individual’s body to produce their own Factor IX, eliminating weekly infusions.

Under the medical supervision of Dr. Aimee Foord, director of C4K’s bleeding and clotting clinic along with Dr. Joseph Lasky, medical director of C4K and the entire C4K medical team, the infusion was completed in C4K’s infusion suite.

The patient, a 39-year-old male from Arizona, will be monitored on a regular basis to ensure the treatment’s success.

“This treatment is ground-breaking for a number of reasons,” said Annette Logan-Parker, chief innovation and advocacy officer at C4K. “Most importantly, Hemgenix® gives the patient a freedom from daily or weekly factor infusions they have not had since their original hemophilia diagnosis. From a larger perspective, being approved to provide this life-changing treatment is another example of how Cure 4 The Kids Foundation is bringing innovation and cutting-edge therapies to the patients of Nevada and the western United States.”

Hemgenix® (etranacogene dezaparvovec-drlb) is the first gene therapy for the treatment of adults with hemophilia B who currently use factor IX prophylaxis therapy, or have current or historical life-threatening bleeding, or have repeated, serious spontaneous bleeding episodes. Although Hemgenix® is not a cure for hemophilia B patients, the medical advancement may reduce, if not, eliminate weekly preventative factor replacement and bleeds.

Hemgenix® relies upon a gene transfer that is administered through intravenous (IV) infusion. The approach introduces a “working” or functional gene into liver cells to “instruct them” to produce factor IX protein, which is deficient in patients with hemophilia B, and which helps form blood clots to prevent prolonged, excessive or life-threatening bleeding.

Hemgenix® has the potential to fundamentally transform the treatment paradigm through a single, one-time infusion in people living with hemophilia B by addressing the genetic cause of the condition.

Because the genes that cause hemophilia A and B are located on the sex-determining X chromosome, the disorder disproportionately affects males. According to the U.S. Centers for Disease Control and Prevention (CDC), as many as 33,000 males in the United States are living with hemophilia. Hemophilia B is a rarer form of the disorder, found in just 3.7 cases per 100,000 males.

Rare Disease Advisory Council seeks input for healthier Nevada

Posted on by David Frye

BY ANNETTE LOGAN-PARKER SPECIAL TO LAS VEGAS BUSINESS PRESS

March 5, 2024 – 9:37 am

Recall your last visit to the doctor’s office. It’s likely that you spent a significant (and possibly frustrating) amount of time waiting in the lobby or even in the exam room before your turn finally arrived.

While I wish I could provide a solution to reduce those waiting times, I must admit that I can’t. However, what I can offer you is an opportunity to make the most of your “wait time” while contributing to a cause that helps our state gain a deeper understanding of the challenges faced by those affected by rare diseases.

In the United States, more than 7,000 rare diseases impact over 30 million individuals. Some of these conditions are exceedingly rare, affecting a handful of families in an entire county. Others, however, touch the lives of hundreds or even thousands of people, including many who live right here in Nevada.

Surprisingly, you may know someone grappling with a rare disease without even realizing it. For instance, childhood cancer is classified as a rare disease. Likewise, many adult forms of cancer fall into this category. Conditions such as sickle cell anemia, hemophilia, various bleeding and clotting disorders, cystic fibrosis, Duchenne Muscular Dystrophy and approximately 50 lysosomal storage diseases, including Pompe disease, Fabry disease and Gaucher disease, all fall under the rare disease umbrella.

In broad terms, a rare disease is one that affects fewer than 200,000 individuals. To ensure Nevada can allocate the necessary resources, treatment options and related services, it’s crucial to have a clear perspective on the number of families impacted by these conditions within the state. And this is where you come in.

The Nevada Rare Disease Advisory Council (NVRDAC) has been tasked with the objective of conducting a comprehensive statistical analysis of the occurrence, causes and economic impact of rare diseases in the state. In order to accomplish this objective, they have put together a statewide needs assessment in the form of an anonymous survey aimed at providing invaluable insights into the prevalence of rare diseases. The “While You Wait” campaign offers you the chance to complete this survey while waiting for your doctor’s appointment. The Nevada Rare Disease Advisory Council (RDAC) is actively seeking survey participants to help identify the extent of rare diseases in Nevada.

In collaboration with medical providers, urgent care centers and various medical offices, we are making every effort to make this survey readily accessible. We’ve asked medical providers to post the flyers with an easily accessible QR code in exam rooms, front offices, waiting areas and anywhere patients will notice them. If you prefer not to wait for your next doctor’s visit, you can complete the survey online at redcap.link/nvrdac .

The “While You wait” needs assessment allows the RDAC to gather insights from individuals who are directly affected by rare diseases or have family members impacted by them.

The survey or “needs assessment” represents just the initial phase of the NVRDAC’s mission. The council’s objectives extend to ensuring that medical providers across the state, both in urban and rural areas, possess the knowledge and awareness required to identify rare diseases, recognize their symptoms and provide appropriate care.

Additionally, the council will explore the consequences of delayed or inadequate treatment on patients’ quality of life and its impact on Nevada’s economy. Finally, the council will examine treatment delivery systems for rare diseases and formulate recommendations aimed at extending the lifespan and improving the quality of life for these patients.

Annette Logan-Parker serves as the chair of the Nevada Rare Disease Advisory Council. Logan-Parker is a former nurse and the founder and former CEO of the Cure 4 The Kids Foundation (C4K), Southern Nevada’s sole pediatric cancer and rare disease treatment center. She now holds the position of C4K’s chief innovation and advocacy officer.

Cure 4 The Kids Foundation Announces Senior Leadership Changes

Posted on by Mitchell Koulouris

Cure 4 The Kids Foundation Announces Senior Leadership Changes

LAS VEGAS – January 8, 2024 – Cure 4 The Kids Foundation (C4K), Southern Nevada’s only pediatric cancer and rare disease treatment center, is pleased to announce the appointment of Christine Tonn as its new chief executive officer (CEO), effective January 1, 2024. This promotion is part of a board of directors-supported management succession plan.

Tonn has been an integral part of Cure 4 The Kids Foundation for more than 15 years, initially serving as the chief financial officer and later being promoted to president in 2021. Her extensive experience in managing the financial impact of healthcare industry changes, including patient services, medical treatments, and reimbursements, has been invaluable to the organization. Tonn’s expertise in medical billing and collection, coupled with her background as a nonprofit auditor, has enabled C4K to navigate these challenges while minimizing the impact on patient services. She also played a key role in the development of C4K’s Charity Care Plan, ensuring that uninsured families can receive the necessary treatment.

“I am incredibly honored to serve as CEO of Cure 4 The Kids Foundation and to lead our team in continuing to support families affected by pediatric cancer and rare diseases in Southern Nevada and beyond,” said Tonn. “Working alongside C4K’s founder, Annette Logan-Parker, for 15 years has been a privilege, and I am grateful for her unwavering support.”

In light of Tonn’s promotion, Annette Logan-Parker, the founder and former CEO of Cure 4 The Kids Foundation, will assume the role of chief advocacy & innovation officer. In this capacity, Logan-Parker will advocate for the medical needs and services of pediatric cancer and rare disease patients with lawmakers at the local, state, and national levels. She will also focus on developing external strategies to enhance C4K’s ability to serve an increasing number of patients and expand research opportunities, including donor engagement and physician recruitment. Logan-Parker will also remain president of the Cure 4 The Kids Foundation Board of Directors.

“I am eager to bring together decision-makers and industry professionals to explore solutions that have contributed to C4K’s success in meeting patient needs,” said Logan-Parker. “While there is a consensus that the U.S. healthcare system is broken, I firmly believe that C4K is in a unique position to demonstrate alternative methods and systems that policymakers can see improve outcomes.”

Cure 4 The Kids Foundation is confident that under Christine Tonn’s leadership as CEO and Annette Logan-Parker’s continued dedication as chief advocacy & innovation officer, the organization will further its mission of providing exceptional care and support to pediatric cancer and rare disease patients.

###

About Cure 4 The Kids Foundation

Founded in Las Vegas in 2007, Cure 4 The Kids Foundation provides high-quality, research-focused medical treatment to children battling cancer and other life-threatening conditions. Cure 4 The Kids Foundation operates the only outpatient childhood cancer treatment center in Nevada and is proudly accredited by The Joint Commission. This stringent medical accreditation and the required unannounced inspections ensure patients are getting the safest care possible. A 501(c)(3) nonprofit organization, Cure 4 The Kids Foundation increases access to specialized treatments that improve patient outcomes. Its Charity Care Program provides high-quality treatment on a sliding-scale basis. No patient is ever turned away for financial reasons. For more information, visit  www.cure4thekids.org.

For additional information, please contact:

Mitch Truswell
Red 7 Communications
mitch@red7communications.com
702-531-4461

Cure 4 The Kids Foundation Adds Dr. Suraj Pratap To Its Team of Exceptional Providers

Posted on by Mitchell Koulouris

Cure 4 The Kids Foundation Adds Dr. Suraj Pratap

To Its Team of Experienced Providers

LAS VEGAS – December 1, 2023 – Cure 4 The Kids Foundation (C4K) is pleased to announce the addition of Dr. Suraj Pratap, M.D. to their team of healthcare providers. As Southern Nevada’s only pediatric cancer and rare disease treatment center, C4K continues to attract highly qualified specialists despite the challenges posed by a nationwide shortage of pediatric sub-specialists.

“We are thrilled to have Dr. Pratap join the team at Cure 4 The Kids Foundation,” said Annette Logan-Parker, CEO of Cure 4 The Kids Foundation. “Nevada is facing a significant physician shortage, but our priority remains expanding our clinic’s specialized physician workforce. Dr. Pratap’s arrival is a testament to our commitment to recruiting top-notch providers.”

Dr. Pratap brings with him a wealth of experience, having previously practiced general pediatrics in Las Vegas. He recently obtained his board-certification in pediatric hematology oncology, which will provide additional resources and expertise to C4K’s existing team of seven providers. Fluent in both English and Hindi, Dr. Pratap will begin seeing C4K patients this month.

Born in India, Dr. Pratap earned his Bachelor of Medicine and Bachelor of Surgery degree from Veer Narmad South Gujarat University. He furthered his education in Texas, obtaining a Master of Science degree in biomedical sciences from the University of North Texas Health Science Center.

Dr. Pratap completed his pediatric residency at the University Hospital of Brooklyn, State University of New York (SUNY), and subsequently pursued a fellowship in pediatric hematology-oncology at the University of Oklahoma Health Sciences Center (OUHSC).

Throughout his career, Dr. Pratap has been actively involved in providing healthcare to those affected by disasters, including the twin earthquakes in Nepal in 2015. He has collaborated on numerous studies published in esteemed peer-reviewed journals such as Pediatric Blood & Cancer, JCO Oncology Practice, JAMA Oncology, and the International Journal of Clinical Pediatrics.

A member of the American Academy of Pediatrics, the American Society of Pediatric Hematology and Oncology, and the American Medical Association, Dr. Pratap is not only dedicated to his profession but also enjoys sketching, painting, poetry, traveling, and trekking in his free time.

Cure 4 The Kids Foundation is proud to have Dr. Pratap join their team, further enhancing their ability to provide exceptional care to pediatric patients and their families in Southern Nevada.

For more information about Cure 4 The Kids Foundation and their services, please visit www.cure4thekids.org.

About Cure 4 The Kids Foundation
Founded in Las Vegas in 2007, Cure 4 The Kids Foundation provides high-quality, research-focused medical treatment to children battling cancer and rare diseases. C4K achieves the extraordinary with a model of success based on transformative innovation. We are one team with one vision and one mission centered around clinical excellence and compassionate care. As a 501(c)3 tax-exempt organization, we are committed to being a new kind of healthcare organization; one that blends the best of what corporate healthcare, education, and research have to offer with the generosity and spirit of charity. This hybrid model allows us to perform like a traditional healthcare facility in terms of best practices yet also allows us to create a uniquely family-centered patient experience. Our Charity Care Program ensures that those without medical insurance or who are unable to pay for services still receive the treatment they deserve. For more information, visit cure4thekids.org.

For additional information, please contact:
Mitch Truswell
Red 7 Communications
702-531-4461
mitch@red7communications.com

Christmas 4 The Kids Digital Album Benefits Pediatric Patients at Cure 4 The Kids Foundation

Posted on by Mitchell Koulouris

Christmas 4 The Kids Digital Album Benefits Pediatric Patients at Cure 4 The Kids Foundation

Album Includes New Version of “Happy Xmas” Featuring Backstreet Boys’ Nick Carter, American Idol’s Kyle Khou

LAS VEGAS – November 7, 2023 – Cure 4 The Kids Foundation (C4K), Southern Nevada’s only pediatric cancer treatment center, has announced the release of Christmas 4 The Kids, a digital music compilation album containing 22 holiday music tracks.

 

The album, available on all major music streaming platforms, features a new version of the John Lennon classic “Happy Xmas” featuring Backstreet Boys’ Nick Carter and American Idol Casting Producer Kyle Khou. One hundred percent (100%) of the streaming proceeds from Christmas 4 The Kids go directly to kids battling cancer and rare diseases.

 

“I’m so happy and fortunate to be part of the Christmas 4 The Kids project,” said Nick Carter. “Cure 4 The Kids Foundation does incredible work serving Southern Nevada’s most vulnerable kids and listening to Christmas 4 The Kids is a simple and easy way to support these courageous kids.”

 

It has never been easier to help children battling pediatric cancer and other rare diseases. By simply streaming any of the 22 tracks on Christmas 4 The Kids, listeners will be making a small donation to C4K. The album is available on all major music streaming services including Apple Music, Spotify, Amazon Prime Unlimited, Pandora and everywhere you can stream digital music. Listeners can find the tracks by searching for Christmas 4 The Kids or asking their smart speaker connected with a streaming service to play Christmas 4 The Kids.

 

“The Christmas holiday is a season of family, hope, love, and optimism. Listening to Christmas 4 The Kids is a simple way to help kids with cancer and rare diseases and provide hope and much-needed financial help to kids and families during the holiday season” said Annette Logan-Parker, Founder and CEO of Cure 4 The Kids Foundation. “We’ve had remarkable support in the entertainment community for this project and are grateful for the outpouring of support both in Las Vegas and around the country.”

 

Among the 22 holiday tracks is a new version of the John Lennon classic “Happy Xmas” featuring Nick Carter of Backstreet Boys. American Idol Casting Producer Kyle Khou joins Carter in a passionate duet on the lead vocal for “Happy Xmas.” The track features professional musicians from shows on the Las Vegas Strip as well as many C4K cancer patients singing on the chorus. Two different mixes of the duet appear on the album from award-winning sound engineers Stephen Hart and Jon Muro. The digital album includes additional holiday tracks by The Smithereens, Ron Dante (former Barry Manilow producer), Alphabet Rockers, (2023 GRAMMY winner for Best Children’s Album) and many more.

 

In addition to the digital album, a music video for “Happy Xmas” is also available. It features well-known celebrities from the Las Vegas Strip including Blue Man Group, Murray SawChuck, the cast of History Channel’s Counting Cars, and others as well patients of Cure 4 The Kids Foundation and the C4K providers who care for them. The video was shot in the state-of-the-art virtual production studio Vū Studios in Las Vegas. The video is available on the Cure 4 The Kids Foundation YouTube Channel.

 

One hundred (100%) of the streaming proceeds will go directly to Cure 4 The Kids Foundation, a 501(c)3 nonprofit organization treating children with cancer and rare diseases – including those who are without medical insurance.

 

Links:

Christmas 4 The Kids Album

Spotify (Album): https://spoti.fi/40kLxCG

iTunes (Album): https://apple.co/46YaxlC

Apple Music (Album): https://apple.co/3QprRJ6

Pandora (Album): https://bit.ly/3QEKjPg

YouTube (Album Playlist): https://bit.ly/3MpYBRr


Happy Xmas (Cancer’s Over) [Single]

Spotify (Single – Muro Mix): https://bit.ly/3QI0yuV

iTunes (Single – Muro Mix): https://apple.co/49mDGsk

Apple Music (Single – Muro Mix): https://apple.co/40qF2hw


Happy Xmas (Cancer’s Over) Official Music Video

https://youtu.be/YBNfEtFWt6E


GoFundMe:

https://gofund.me/ea6c170e

 

Track list:

 Happy Xmas (Cancer’s Over) [Jon Muro Mix] – Kyle Khou/Nick Carter

Santa Loves Las Vegas – Rob Hegel

Little Saint Nick – Jeffrey Foskett

Have Yourself A Merry Little Christmas – Ron Dante

Christmas Magic Is Real – Alphabet Rockers

Last Christmas – Sage Johnston

Happy Xmas (Cancer’s Over) – [Stephen Hart Mix] – Kyle Khou/Nick Carter

The Bells of St Victor – Andrew Gold

Rockin’ Around The Christmas Tree – Smithereens

Christmas (Baby Please Come Home) – Doc Oliver

I’m Coming Home For Christmas – Orleans

Away in a Manger – George Hill

2000 Miles – The Black Donnellys

Happy Xmas (Cancer’s Over) [Jon Muro Mix] – Kyle Khou

All I Want For Christmas Is You – Mary Wilson

I’m a Little Angel – Auntie Kayte

On Christmas Eve – Andrew Gold

Let It Snow Let It Snow Let It Snow – Jeff Jimerson

That Festive Feeling – Huuli

O Holy Night – Jessica Rosado

Happy Xmas (Cancer’s Over) [Stephen Hart Mix] – Kyle Khou

Happy Xmas (Cancer’s Over) [Instrumental] – C4K Kids

 

About Cure 4 The Kids Foundation

Founded in Las Vegas in 2007, Cure 4 The Kids Foundation provides high-quality, research-focused medical treatment to children battling cancer and other life-threatening conditions. Cure 4 The Kids Foundation operates the only outpatient childhood cancer treatment center in Nevada and is proudly accredited by The Joint Commission. This stringent medical accreditation and the required unannounced inspections ensure patients are getting the best care possible. A 501(c)(3) nonprofit organization, Cure 4 The Kids Foundation increases access to specialized treatments that improve patient outcomes. Its Charity Care Program provides high-quality treatment on a sliding-scale basis. No patient is ever turned away for financial reasons. For more information, visit  www.cure4thekids.org.

 

For additional information, please contact:

Mitch Truswell

Red 7 Communications

mitch@red7communications.com

702-531-4461

Cure 4 The Kids Foundation Healthcare Professionals Publish Research Paper

Posted on by Mitchell Koulouris

Cure 4 The Kids Foundation Healthcare Professionals Publish Research Paper

Research Paper on B-cell acute lymphoblastic leukemia Published in Frontiers in Oncology

Cure 4 The Kids Foundation healthcare professionals, Dr. Sumit Gupta, Dr. Joseph Lasky, and Nurse Practitioner Jessica Casey, authored a new research paper titled “Blinatumomab as upfront consolidation and maintenance therapy in a pediatric patient with high-risk B-cell acute lymphoblastic leukemia” in Frontiers in Oncology on November 1, 2023. You can read the entire paper here.