Congratulations Dr. Lasky!

We’re proud to announce some news about Dr. Lasky!  He has been promoted to director of our Bleeding and Clotting Disorders Clinic.

As one of our board-certified Pediatric Hematology-Oncology physicians, he will continue to see patients affected by childhood cancer. But he will also oversee all aspects of medical treatment for our patients affected by bleeding and clotting disorders, such as hemophilia and von Willebrand disease and other related conditions.

Since 2009, Dr. Lasky has served as principal investigator for a number of clinical trials and has participated in other research activities aimed at improving treatments for those with bleeding and clotting issues.

Congratulations Dr. Lasky!

A Big Thank You To Medical Technology Associates!

Since the very beginning of Cure 4 The Kids Foundation, donors have been an integral part of what we do and what we offer patients. For instance, large donations have helped to underwrite entire programs, while smaller contributions have helped us purchase items that we know make patients more comfortable as they undergo treatments.

We want to take this opportunity to tell you a little bit about Medical Technology Associates (MTA), Inc. as they have provided some essential services to us. You may not be familiar with their name, but what MTA have provided to us is a benefit to all our patients, and we’re appreciative of their support.

Although you may think of us as a medical clinic, technically, we are an ambulatory care center, a specific designation regarding the medical services we are allowed to provide. This designation means in the course of treatment we are allowed to deliver conscience sedation for procedures; such as bone marrow biopsies and lumbar punctures, as well as provide complex infusion services, oncology/cancer care, and other medical services.

As a provider of these services, we must also ensure that any medical device or delivery system that helps us provide these services are functioning correctly, including our medical gas and oxygen equipment. For example, many of our rooms are capable of delivering oxygen when needed, but we need to ensure the pipeline that delivers that oxygen is pristine, free of any contaminants and providing the proper amount of oxygen. Additionally, alarm systems that alert staff when the oxygen tanks are low also need to be tested and working correctly. That’s where companies, such as MTA are experts.

Over the past four decades, MTA has been in the business of testing medical gas and vacuum systems for hospitals, surgery centers, pharmacies, and labs. Patients, especially those with compromised immune systems, must be assured that any kind of medical gas delivered to a patient is free of any contaminants. Thanks to the efforts of MTA, we can assure our patients all oxygen and vacuum systems are in proper working order.

But MTA has gone above and beyond. 

Usually, this kind of required testing would cost a clinic like ours several thousand dollars. But MTA’s President and CEO, Val Marks, decided to donate the cost of these services.  We are thrilled and thankful for their generosity, and we wanted to find out more about what led to this decision.

“We know that Cure 4 The Kids Foundation is Nevada’s only treatment center for childhood cancer and other pediatric catastrophic diseases, and at MTA we have a strong sense of community,” said Marks. “Family and children are a huge part of why we do what we do, and we also have employees and customers in the Las Vegas market.  Given this connection, it was a definite yes when MTA’s Western Regional Manager, Rick Pell, reached out to me and asked if we could donate our services,” she said.

As a business, MTA knows the importance of connecting with the communities in which they operate.  But Marks said this particular donation was unique for them.

“Both Rick and I felt moved by the cause of Cure 4 The Kids Foundation, and we wanted to assist the Foundation by donating our services,” she said. “We are proud to help the Foundation achieve its vision of creating a new place of caring for the child — it’s a win-win for the community and its families,” said Marks.

Critical Care Comics Fundraiser Will Help Cure 4 The Kids Foundation Patients

Superheroes, comic books, and joy! That’s what the team from Critical Care Comics brings to our patients during their regular visits. Usually twice a month, you’ll find Spiderman, Batman, Black Panther and a long list of other superheroes stopping by our clinic with a healthy supply of comic books.

  • 8 News Now recently featured the nonprofit organization and what they do for our patients during their Acts of Kindness segment. Thanks, Critical Care Comics!

Sickle Cell Disease Research And Surveillance Funding Approved!

We are happy to recognize that there have been great improvements in caring for people with sickle cell disease (SCD); however, there are still some things we don’t know about the life-long condition which can have devastating effects on a patient’s health. Even the exact number of those affected by SCD in the United States is unknown. The Centers for Disease Control and Prevention estimates about 100,000 Americans are affected. Thanks to a recent bill that became law, we should have better intelligence in the future about how many people are affected by SCD.

The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention and Treatment Act of 2018 was approved by both houses of Congress and signed by the President in December. In this day of partisan bickering, we’re happy to say this bill was a bi-partisan effort.  It was introduced by Senators Cory Booker, D-New Jersey and Tim Scott, R-South Carolina in February 2018. The companion bill was introduced in the House of Representatives by Michael Burgess, MD, R-Texas, and Danny Davis, D-Illinois. President Trump signed the bill in early December 2018.

 The bill reauthorizes a sickle cell disease prevention and treatment program and also provides grants for research, surveillance, prevention and treatment of heritable blood disorders. This is an important aspect of the new law. It provides grants to interested states, local health departments and institutions of higher education to help understand the prevalence and geographic distribution of the disease.  As you’ll recall, the CDC can only estimate how many people are affected by this disease in the United States. Programs that help to increase surveillance should help experts refine the actual number of those affected in the future.

The bill will also create strategies to improve access to screening, treatment and management of SCD. If the medical community is to provide the best outcomes for SCD patients, those diagnosed with sickle cell disease must have options to access proper medical attention, as well as providers who have the latest information about treatments and health management options.

 

“This new law ensures that funding is available to provide better access to treatment and better treatments for patients across the country, which is extremely important,” said Nik Abdul Rashid, M.D., director of the Sickle Cell Treatment Center of Nevada, a specialty clinic of Cure 4 The Kids Foundation. “This law also sets aside funding for better surveillance of just how many people are affected by the disease, and what kind of treatment they are currently receiving,” she said.

 

Since the founding of Cure 4 The Kids Foundation in 2007, we have treated children and adult patients affected by sickle cell disease.  The Sickle Cell Treatment Center of Nevada offers patients the most up-to-date treatment based on clinical research, good health practices and medical expertise in treating sickle cell disease.  The treatment center offers on-going comprehensive clinics for sickle cell patients on a monthly basis.  It’s one appointment, but the patient is seen by a number of specialists during that time to provide a full and true picture of the patient’s health. 

Our sickle cell team includes a board-certified pediatric hematologist, pediatric nurse practitioner, pediatric neuropsychologist, palliative care and pain specialist, social worker, education specialist, child life specialist, clinical research associate and registered nurse.  

We’re also part of the Pacific Sickle Cell Regional Collaborative (PSCRC), a grant-funded program through the U.S. Department of Health and Human Services focused on offering education, information and collaboration on sickle cell treatments and meaningful data collection. 

Like all our clinic services, no patient is turned away from specialized treatment for financial reasons. Our Charity Care Program can help those without medical insurance and those unable to pay for treatment.

Our clinic is open to all pediatric patients with sickle cell disease from birth to 18 years old, as well as established adult patients. If you would like to learn more about what our clinic can offer sickle cell patients, or to schedule an appointment, please call (702) 732-1493.

D5136C00009 Sickle Cell Disease

Sickle Cell

Protocol:D5136C00009

Condition or Disease: Sickle Cell Disease

Study Type: Interventional (Clinical Trial)

Status: Open for enrollment

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

Principal I investigator: Nik Farahana Nik Abdul Rashid, MD

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

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

GBT440-034 Sickle Cell Disease

Sickle Cell

Protocol:GBT440-034

Condition or Disease: Sickle Cell Disease

Study Type: Interventional (Clinical Trial)

Status: Open for enrollment

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

Principal I investigator: Alan Ikeda, MD

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

GBT440-031 Sickle Cell Disease

Sickle Cell

Protocol:GBT440-031

Condition or Disease: Sickle Cell Disease

Study Type: Interventional (Clinical Trial)

Status: Enrollment Paused

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

Principal I investigator: Alan Ikeda, MD

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