Rare Disease Advisory Council seeks input for healthier Nevada

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

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.

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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

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

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

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.

Cure 4 The Kids Foundation and SilverSummit Healthplan Partnership Results in Recruitment of Southern Nevada’s Newest Pediatric Rheumatologist

Cure 4 The Kids Foundation and SilverSummit Healthplan Partnership Results in Recruitment of Southern Nevada’s Newest Pediatric Rheumatologist

$100,000 SilverSummit Community Investment Program Grant Helped Cure 4 The Kids Foundation Recruit Dr. Saumya Joshi to Nevada

LAS VEGAS – Oct. 23, 2023 – A groundbreaking collaboration between Cure 4 The Kids Foundation (C4K), Southern Nevada’s only pediatric cancer and rare disease treatment center, and SilverSummit Healthplan, a wholly-owned subsidiary of Centene Corporation, will bring a pediatric rheumatologist to Southern Nevada patients.

Beginning January 8, 2024, Saumya V. Joshi, M.D., M.S., will see C4K patients who are affected by a range of rheumatological conditions that include lupus, scleroderma, juvenile idiopathic arthritis, and many other lesser-known rheumatic conditions.

There is a critical shortage of board-certified pediatric rheumatologists in the United States, with about 400 currently practicing, according to the Arthritis Foundation. According to the Arthritis Foundation, pediatric rheumatologists are primarily clustered in and around large metropolitan areas. As a result, an estimated 300,000 pediatric patients with juvenile rheumatic diseases have limited access to care.

“There is a tremendous access gap in our community for pediatric rheumatology patients,” said Annette Logan-Parker, CEO of Cure 4 The Kids Foundation. “With Dr. Joshi’s arrival, our rheumatology patients can access expert care in our clinic. I am forever grateful to SilverSummit Healthplan, which sought to improve our patients’ lives and impact the greater community. SilverSummit’s support and generosity will immediately and positively impact our patients and their health for years to come.” 

A $100,000 grant from SilverSummit Healthplan’s Community Investment Program provided the financial resources allowing C4K to recruit, relocate and initiate Dr. Joshi’s state-required medical onboarding process.

“SilverSummit is steadfast in its commitment to forge meaningful collaborations with community-driven organizations such as Cure 4 The Kids Foundation,” said Nicole King, vice president of Community Solutions for SilverSummit Healthplan. “We strive to develop innovative solutions and boost the capabilities of these organizations to better serve our members’ needs. Dr. Joshi’s appointment marks a significant stride in this direction, and we are optimistic about the impact this will have on Nevada children and the families served by the Foundation.”

Dr. Joshi is board certified in pediatrics and completed his residency at SUNY Downstate Medical Center in Brooklyn, NY. He served his fellowship in pediatric rheumatology at Floating Hospital for Children at Tufts Medical Center in Boston, MA., and also holds a Master of Science Degree in Clinical Research from Tufts Graduate School of Biomedical Sciences, also in Boston. Dr. Joshi is board eligible in pediatric rheumatology. Most recently, he served as assistant professor of pediatric rheumatology at Arkansas Children’s Hospital, a nationally ranked facility affiliated with the University of Arkansas for Medical Sciences.

Before the pandemic, Cure 4 The Kids Foundation collaborated with Children’s Hospital Los Angeles (CHLA) to bring board-certified pediatric rheumatologists to C4K patients every month. As a result of the COVID-19 pandemic, the visiting physician program ended.

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. 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. 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.

About SilverSummit Healthplan

SilverSummit Healthplan is a managed care plan that provides health insurance to the people of Nevada. Established in 2017, SilverSummit exists to improve the health of its members through focused, compassionate and coordinated care. SilverSummit is a wholly owned subsidiary of Centene Corporation, a diversified, multi-national healthcare enterprise. For more information, visit www.silversummithealthplan.com.

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For additional information please contact:

Cure 4 The Kids Foundation
Mitch Truswell
Red 7 Communications
702-531-4461
mitch@red7communications.com

SilverSummit Healthplan

Janie Root  
702-808-5861
jane.root@silversummithealthplan.com

Governor Joe Lombardo To Sign Senate Bill 221 Increasing Medical Reimbursements For Pediatric Cancer Patients on Medicaid

Governor Joe Lombardo To Sign Senate Bill 221 Increasing Medical Reimbursements For Pediatric Cancer Patients On Medicaid

WHAT: Nearly ALL children in Nevada diagnosed with cancer and other catastrophic diseases receive treatment, attend doctors visits, undergo bloodwork and routine lab tests, and receive chemotherapy at an outpatient clinic – such as Cure 4 The Kids Foundation – not at a hospital.

However, outdated Medicaid reimbursement guidelines do not provide an appropriate billing category for pediatric cancer and rare disease clinic treatments provided at an outpatient clinic. Therefore, Cure 4 The Kids Foundation (C4K) and others have provided the treatments to Medicaid patients without question, but have done so with inadequate reimbursement from Medicaid. Those additional costs reduce the funds available for other important programs at C4K.

As a result, C4K, who treats the majority of Nevada’s pediatric cancer and rare disease patients has incurred a significant financial burden over the years due to these unreimbursed but essential medical services. 

The signing of SB 221 by Governor Joe Lombardo will correct this outdated billing model and establish billing guidelines and a new rate methodology for outpatient clinics which are consistent with prevailing best practices for reimbursing specialized outpatient clinics. The primary sponsors for SB 221 are Senator Fabian Doñate (D), Senator Jeff Stone (R), and Senator Carrie A. Buck (R).

WHEN: Monday, July 17, 2023

TIME: 2:30 P. M.

WHERE: Grant Sawyer State Office Building, 555 E Washington Avenue, Las Vegas, NV 89101.

Cure 4 The Kids Foundation Adds Dr. Raul Montiel-Esparza To Its Team of Experienced Providers

Cure 4 The Kids Foundation Adds Dr. Raul Montiel-Esparza

To Its Team of Experienced Providers

LAS VEGAS – August 11, 2023 –  Cure 4 The Kids Foundation, Southern Nevada’s only pediatric cancer and rare disease treatment center, is thrilled to announce the addition ofDr. Raul Montiel-Esparza to their team of exceptional providers.

Dr. Montiel-Esparza brings a wealth of expertise in pediatric stem cell transplantation and cellular therapy, further enhancing the Foundation’s ability to provide exceptional care to patients throughout the region. Montiel-Esparza is board-certified in pediatrics and pediatric hematology oncology.

Dr. Montiel-Esparza received his medical education at the Monterrey Institute of Technology and Higher Education (ITESM) School of Medicine in Monterrey, Mexico. He then completed his pediatric residency at the Children’s Medical Center at the University of Texas Southwestern Medical Center in Dallas. His passion for pediatric hematology oncology led him to pursue a Stem Cell Transplantation and Cellular Therapy clinical fellowship at the renowned Lucile Packard Children’s Hospital at Stanford University School of Medicine in Palo Alto, California.

“We are so delighted to welcome Dr. Montiel-Esparza to our team and to Southern Nevada,” said Annette Logan-Parker, CEO, Cure 4 The Kids Foundation. “His expertise in pediatric stem cell transplantation and cellular therapy will greatly benefit our patients and further our mission to always provide the highest quality care.”

Dr. Montiel-Esparza is an active member of several esteemed organizations, including the Pediatric Transplantation & Cellular Therapy Consortium (PTCTC), the American Society of Hematology (ASH), the American Society for Transplantation and Cellular Therapy (ASTCT), the Children’s Oncology Group (COG), and the American Academy of Pediatrics (AAP).

Dr. Montiel-Esparza’s contributions to the medical community extend beyond his clinical work. He has co-authored numerous publications in esteemed journals such as Clinical Practice in Pediatric Psychology, Pediatric Blood & Cancer, Cardio Oncology, The Journal of Pediatric Hematology Oncology, and Gaceta Mexicana De Oncologia.

Fluent in both English and his native Spanish, Dr. Montiel-Esparza’s ability to communicate effectively with diverse patient populations is a valuable asset to Cure 4 The Kids Foundation. When he is not providing exceptional care to his patients, Dr. Montiel-Esparza enjoys biking, oil painting, and reading.

Cure 4 The Kids Foundation is proud to have Dr. Montiel-Esparza join their team of dedicated providers. His addition reinforces their commitment to delivering comprehensive and cutting-edge treatments to children battling cancer and rare diseases in Southern Nevada.

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

Cure 4 the Kids Foundation’s Annette Logan-Parker to Chair Nevada Rare Disease Advisory Council

Cure 4 the Kids Foundation’s Annette Logan-Parker to Chair Nevada Rare Disease Advisory Council

LAS VEGAS – January 19, 2023 – Annette Logan-Parker, founder and CEO of Cure 4 The Kids Foundation, Nevada’s premier pediatric cancer and rare disease treatment center, has been selected as chairperson of The Nevada Rare Disease Advisory Council (NVRDAC).

NVRDAC was formed under SB315 during Nevada’s 2019 Legislative Session. The council’s mission as an advising body is to provide a platform for those who are affected by rare diseases, including pediatric cancer. The council’s goal is to provide the rare disease community with a stronger voice in state government, including the ability to make recommendations to state leaders.

“I’m excited to help bring greater awareness and attention to the many rare diseases that affect Nevada patients and their families,” said Annette Logan-Parker. “We’re fortunate that Nevada is among the states looking to study the incidence and effect of rare diseases on patients, their families and the community. It’s a great first step.”

Among the objectives of the council is to create a statewide registry of rare diseases diagnosed in Nevada to help determine the genetic and environmental factors that contribute to rare diseases.

Other NVRDAC objectives include:

  • Increase awareness among providers of health care of the symptoms of and care for patients with rare diseases
  • Study the effect of early treatment for rare disease on the quality of life for patients suffering from rare disease
  • Determine the effect of delayed or inappropriate treatment on the quality o life for patentees suffering from rare disease and the economy of Nevada.
  • Evaluate the systems for delivery of treatment for rare disease in place in Nevada and development recommendation to increase survival rates and quality of life of patients

A rare disease is a condition or disorder that affects fewer than 200,000 individuals in the United States. There are approximately 7,000 rare diseases and 25-30 million Americans are affected by these rare disorders.