Pediatric Genetics in Nevada: Specialized and Rare Disease Care

Key Takeaways:

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

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

A Revolutionary Approach to Family Genetics in Nevada

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

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

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

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

Dr. Joseph Lasky, Medical Director at Cure 4 The Kids Foundation

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

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

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

Going Above and Beyond to Serve Families Facing Rare Diseases

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

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

The Power of Collaboration in Complex Genetic Cases

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

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

Navigating the Emotional Journey

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

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

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

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

Accessing Care at Cure 4 The Kids Foundation

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

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

Building a Bright Future for Pediatric Healthcare in Nevada

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

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

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

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

D5136C00009 Sickle Cell Disease

Sickle Cell

Protocol:D5136C00009

Condition or Disease: Sickle Cell Disease

Study Type: Interventional (Clinical Trial)

Status: Open for enrollment

Study Title: A randomised, double-blind, parallel-group, multicenter, phase III study to evaluate the effect of ticagrelor bid versus placebo in reducing the number of VOCs in paediatric patients with sickle cell disease.

Principal I investigator: Nik Farahana Nik Abdul Rashid, MD

More Info: //clinicaltrials.gov/ct2/show/NCT03615924

GBT440-034 Sickle Cell Disease

Sickle Cell

Protocol:GBT440-034

Condition or Disease: Sickle Cell Disease

Study Type: Interventional (Clinical Trial)

Status: Open for enrollment

Study Title: An Open Label Extension Study GBT440 administered Orally to Patients with Sickle Cell Disease Who Have Participate in GBR440 Clinical Trials.

Principal I investigator: Alan Ikeda, MD

More Info: //clinicaltrials.gov/ct2/show/NCT03573882

GBT440-031 Sickle Cell Disease

Sickle Cell

Protocol:GBT440-031

Condition or Disease: Sickle Cell Disease

Study Type: Interventional (Clinical Trial)

Status: Enrollment Paused

Study Title: A Double-blind, Randomized, Placebo-controlled, Multicenter Study of GBT440 Administered Orally to Subjects with Sickle Cell Disease

Principal I investigator: Alan Ikeda, MD

More Info: //clinicaltrials.gov/ct2/show/NCT03036813