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

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

Doctor Mark Eugene Nunes

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

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

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

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

He is bringing that expertise here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

January 22, 2025

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

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

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

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

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

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

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

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

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

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

Hemophilia Patient Receives FDA Approved Gene Therapy Treatment

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.

VTS-270-303 Niemann-Pick Disease, Type C

Genetics

Protocol:VTS-270-303

Condition or Disease: Niemann-Pick Disease, Type C

Study Type: Interventional (Clinical Trial)

Status: Opening Mid 2019

Study Title: An Open-label, Multicenter Safety and Tolerability Study of VTS-270 (2-hydroxypropyl-ë_-cyclodextrin) in Pediatric Subjects Aged < 4 Years With Neurologic Manifestations of Niemann-Pick Type C (NPC) Disease

Principal I investigator: Alan Ikeda, MD

More Info: //clinicaltrials.gov/ct2/show/NCT03687476

VTS-270-001 Niemann-Pick Disease, Type C

Genetics

Protocol:VTS-270-001

Condition or Disease: Niemann-Pick Disease, Type C

Study Type: Expanded Access

Status: Open for enrollment

Study Title: An Open-label Expanded Access Treatment Protocol for VTS-270 (2-hydroxypropyl-ë_-cyclodextrin) in Patients With Neurologic Manifestations of Niemann-Pick Type C Disease (NPC)

Principal I investigator: Alan Ikeda, MD

More Info: //clinicaltrials.gov/ct2/show/NCT03643562