Day: March 12, 2025

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

Posted on by David Frye

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.”

NV congressional delegates to make statements by the company they keep at Trump’s speech

Posted on by David Frye

When Rep. Susie Lee, a Democrat from Nevada, attends President Donald Trump’s address to a joint session of Congress Tuesday,  she’ll be “paying close attention to what the President doesn’t say in his address, which is how kids with disabilities will suffer without special education programs while billionaires get tax breaks.” 

Lee, who routinely prides herself for her bipartisanship, is hoping to stick it to Trump by bringing along Michelle Alejandra Booth, an education advocate and mother of an autistic child.

Nevada received $97.2 million in federal funding for more than 67,000 special needs students in the last fiscal year, according to Lee, who said in a news release that Trump’s cuts “would devastate special education programs in Nevada.” 

Sen. Catherine Cortez Masto (D-NV), like Lee, is focusing on Trump’s threatened cuts to education funding and bringing Jason Shipman, principal of a high-achieving school for low-income students in Sparks, to Trump’s speech. 

“As schools across the country face the potential cuts to critical federal funding, I won’t abandon our educators,” she said in a news release. ”I’m proud to work with Nevada leaders like Principal Shipman to ensure our students have everything they need to thrive.”

Cortez Masto says she’ll be looking for Trump to “put his money where his mouth is – I want to hear real plans for how he is going to lower costs for families.” In the first month of Trump’s second term, she said in a statement, families “have seen their cost-of-living skyrocket, and new taxes on food, energy, and cars are on the horizon.”

Sen. Jacky Rosen announced Monday she’ll bring Dominic Rampa, a Las Vegas resident who has relied on Medicaid since he was a child to pay for treatments for genetic disorders, juvenile rheumatoid arthritis, and other conditions. He’ll be accompanied by his mother, Rebecca Ennis. Without Medicaid, Rampa “would lose the health care coverage he needs to live, which at a minimum comes out to around $200,000 per year,” the news release said. 

More than 350,000 children are enrolled in Medicaid/CHIP in Nevada. 

Rep. Dina Titus, a Democrat, did not respond to the Current’s request for comments.

Rep. Mark Amodei, a Republican, also did not respond.

Other Democrats, according to news reports, are planning to be accompanied by veterans and others recently severed from their federal government jobs by Elon Musk’s figurative chainsaw, the Department of Government Efficiency (DOGE).   

Unlike 2017, when Democrats viewed Trump’s electoral college victory as an aberration, and used his address to Congress as a platform to voice their resistance, 2025 presents a new challenge – how to wave the progressive flag in the face of a majority electorate that voted, with eyes wide open, for Trump. 

The president is on a mission to wreak “chaos and cruelty,” says U.S. Rep. Steven Horsford, a Democrat from Nevada. 

“A part of it is to distract us while they work on their tax giveaway scam for the rich and the billionaires. But it’s also to dismantle the very institutions – whether it’s education, health care, or our Veterans’ Affairs system – that so many people rely on,” Horsford said when asked about Trump’s endgame. “He’s about tearing it down, and he does not care, because for him, this is about doing one thing – giving tax breaks to himself, Elon Musk and the billionaire friends who were in the front row of his inauguration and to whom he has all but abdicated our federal Government.”

Last week the House of Representatives voted by a slim margin of 217-215 in favor of Trump’s budget resolution to gut government spending.

“The House Republican budget is a ‘Screw America’ plan that will devastate essential health services, including Medicaid in Nevada,” Horsford said during an interview Monday. “It not only cuts $2 trillion on the backs of working people, the most vulnerable, it increases the deficit over $4 trillion to do what? To leave us carrying the bag and give tax breaks to big corporations, tech tycoons, and billionaires. That is the Donald Trump way.” 

Billionaire wealth increased by $1.4 trillion—or $3.9 billion per day—in the U.S. alone in 2024, and 74 more people became billionaires, according to OXFAM International, a global organization dedicated to ending poverty and injustice. 

Horsford said Monday that he’ll be accompanied to Trump’s speech by Yolanda Garcia, a Las Vegas hospitality worker who earned $2.13 as a subminimum wage employee before moving to Nevada, where the practice of paying tipped earners less than non-tipped workers is illegal. 

“That is a Jim Crow-era policy from post-slavery, and 70% of those workers are women and people of color,” Horsford said, adding Garcia can “speak to how life changing it is to escape the poverty trap” of being paid a subminimum wage, a practice endured by some 6 million tip earners in 29 states. “These employers are actually skimming off of these workers by not paying them a livable wage.”

Unlike Trump’s ‘no tax on tips’ bill, which would deliver a modest savings of about $35 a week to about 60% of tipped earners, Horsford’s bill seeks to also eliminate subminimum wages.  

“I believe women and all people deserve to get paid a livable wage, and that one job should be enough,” he said, adding that employers “are actually skimming off of these workers by not paying them a livable wage.” His bill, he adds, has “guardrails so that millionaires can’t cheat the system.”  

Horsford is one of two Democrats to serve on the Department of Government Efficiency caucus, a position he says he volunteered for in order to ward off debates on cuts to Medicare, Social Security, and more recently, Medicaid.

“I chose to participate so that I could be in the room and defend my constituents from those cuts,” Horsford said. “Elon Musk is an unelected bureaucrat who is trying to get richer off of the American taxpayer, and his actions around the mass firings are illegal. The data breach, the largest in U.S. history, is illegal. And the dismantling of federal agencies, and unilaterally deciding what grants or contracts to pay or not is illegal.”

Horsford says Democrats are working “within the Congress and with groups outside to use the legal process to hold him and his hackers accountable for their illegal activity.”  He says he still has faith in the judicial system. 

As for the DOGE caucus, which has met twice, Horsford says he’ll begin the search for fraud with “Elon Musk’s (government) contracts, and corporate subsidies to Big Oil and Big Pharma.” 

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

Posted on by David Frye

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.