Author: David Frye

Fashion & Philanthropy’s Fantastic Night Out! Circus Couture “RE:imagined” Happening May 1 at The Theater at Virgin Hotels Las Vegas

Posted on by David Frye

 

April 17, 2025 By Red 7 Communications

LAS VEGAS – April 15, 2025 –  Southern Nevada’s premier fashion, performance, and philanthropic event, Circus Couture, returns to The Theater at Virgin Hotels Las Vegas on Thursday, May 1, 2025, in support of the courageous children receiving treatment at Southern Nevada’s only pediatric cancer and rare disease treatment center, Cure 4 The Kids Foundation (C4K).

Circus Couture RE:imagined – presented by United Healthcare – is an entertaining and immersive event that honors the triumphs and challenges faced by the brave warriors and families served by C4K. This year, the audience will be transported through the elements – fire, water, earth, and air – to artistically illustrate the transformation patients experience as part of their challenging health journeys.

“Without a doubt, this is one of the best nights to experience in Las Vegas,” said Annette Logan-Parker, Founder and Chief Innovation and Advocacy Officer at C4K. “To see the artists, technicians, and fashion designers put their heart and soul into creating this special night supporting our patients and our organization is an inspiration to all of us.”

From its beginning in 2010, Circus Couture has featured fantastical, inventive, and often avant-garde designs created by local fashion designers, many of whom work as wardrobe professionals for well-known Las Vegas production shows. Circus Couture RE:imagined gives the designers an opportunity they often don’t have in their work —the ability to craft their own designs and present them to the public.

For nearly 20 years, the proceeds from Circus Couture have tremendously impacted C4K’s ability to provide new and innovative services to the community. Each year, more than 7,000 unique patients receive treatment at the clinic for pediatric cancer, rare diseases, bleeding disorders, and rheumatological and genetic conditions. C4K’s Charity Care Plan ensures that those without medical insurance or the financial means to pay for services receive the same high-quality, research-driven treatment.

This year, Circus Couture RE:imagined will honor two outstanding individuals who have consistently supported C4K and whose efforts have helped expand community services. Farhan and Ellie Naqvi – Naqvi Injury Law – are being recognized as the 2025 Community Partner of the Year. Since 2019, Farhan Naqvi has been a C4K Board of Directors member. In addition to its long history of financial support for the organization, Naqvi Injury Law recently partnered with the Vegas Golden Knights, allowing hats designed by C4K patients to be sold at the VGK team store, with proceeds going to C4K.

Doors for Circus Couture RE:imagined open at 6 p.m. for the silent auction and a special wine tasting presented by Allegretto Vineyard Resort of Paso Robles, California. The dinner and show begin at 7 p.m. A limited number of general admission tickets are available for $35 at cure4thekids.org but do not include dinner.

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.

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.

Cure 4 The Kids Foundation’s “Happy Xmas (Cancer’s Over)” Music Video Wins Pacific Southwest EMMY® Award

Posted on by David Frye

June 24, 2024 By Red 7 Communications

LAS VEGAS – June 24, 2024 – “Happy Xmas (Cancer’s Over),” a holiday-themed track and music video featuring Cure 4 The Kids Foundation patients, celebrities, and well-known recording artists, received the 2024 EMMY® for Outstanding Musical Composition & Arrangement by the National Academy of Television Arts and Sciences, Pacific Southwest Chapter.

The EMMY® was presented to Mitch Koulouris, the driving force behind Christmas 4 The Kids, a 22-track holiday album that included the song “Happy Xmas (Cancer’s Over).” One hundred (100) percent of the proceeds from sales and streaming of the 22 songs continue to benefit Cure 4 The Kids Foundation, Southern Nevada’s only pediatric cancer and rare disease treatment center.

“I’m honored and humbled to receive such a prestigious award for this project” said Koulouris. “More importantly, this EMMY® win helps shine a bright light on the important, life-saving work by Cure 4 The Kids Foundation for the children of Nevada.

Koulouris, director of social media for Cure 4 The Kids Foundation, has a long history working in the music industry. He founded what quickly became the world’s largest digital music distribution company, was a GRAMMY® voting member for over a decade, and served two terms on the GRAMMY® Board of Governors. His unique rendition of the John Lennon classic “Happy Xmas (Cancer’s Over)” features American Idol Casting Producer and season 11 contestant Kyle Khou and Backstreet Boys’ Nick Carter in a dynamic and impassioned vocal performance duet.

“I could not be happier to hear that our rendition of “Happy Xmas (Cancer’s Over)” featuring Kyle Khou, which was recorded for the 2023 Christmas 4 The Kids holiday album, has won the EMMY award for Outstanding Musical Composition/Arrangement for the NATAS Southwest Region. Wow!” said Nick Carter of Backstreet Boys. “I am so grateful to be a part of this project and to support an organization that is doing so much to help improve the lives of so many children and their families in Nevada. This award is for them!”

In addition to producing the digital album and single, Koulouris also produced and directed the “Happy Xmas (Cancer’s Over)” music video at the state-of-the-art Vū Studios, which featured Khou, Carter, Las Vegas celebrities and supporters, as well as patients and providers of Cure 4 The Kids Foundation. The “Happy Xmas” track was recorded at the Electric Shop Recording Studios in Las Vegas.

The EMMY® win is the first on behalf of Cure 4 The Kids Foundation.

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 cure4thekids.org

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.