Category: Blog

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.

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.

Cherlyn Arrington strongly believes there are angels in our midst.

In fact, she will tell you those angels are partly responsible for the successful Santa Train event enjoyed by more than 150 Cure 4 The Kids Foundation patients and their families back in November.

We could not have offered this adventure without the help, support, and dedication of Cherlyn Arrington, her family and her troupe of volunteers.

We wanted to find out more about how this idea all came together, and during our conversation with Cherlyn, we learned it began with a simple request from her son, Brandon.  He wanted to have a birthday party — something he’s never previously asked for.  Brandon is on the spectrum, and a birthday party with all the sensory stimulation that comes along with it can be overwhelming and not so enjoyable for him. Not only did Brandon tell his mom he wanted to have a party, but he wanted to donate all the presents intended for him, to children who really needed them. Cherlyn asked her son to start thinking about which charity should receive the presents while she worked on the birthday party details.

With some luck, Cherlyn stumbled upon a local karate studio — Ageless Martial Arts —where the instructor, Sensei Lorenzo, had the perfect solution to keep the noises manageable for Brandon: noise canceling headphones! With the party now planned, Brandon had discovered Cure 4 The Kids Foundation and decided the children in treatment would receive the gifts intended for him.

“We had a great turnout, about 35 kids attended the party.  When we explained that the gifts would be donated to Cure 4 The Kids Foundation they looked at us a little funny at first. Thankfully,  we had Cure 4 The Kids Foundation’s Amber Williams at the party and she answered a lot of questions about who would ultimately receive the gifts,” said Cherlyn.

About that same time, Cherlyn says a couple of other things occurred which helped to bring the Santa Train event to fruition. Coincidence? Cherlyn also attributes this to her angels.

Cherlyn happened to be running for political office earlier this year, and she was discussing the idea of the Santa Train with one of her supporters. To Cherlyn’s surprise — and out of the blue — the caller suggested they could underwrite the cost of the event!  Not long after that conversation, Cherlyn, who is also a Cub Scout leader, found herself at the Nevada State Railroad Museum in Boulder City on a Scout outing. That’s where she met one of the museum administrators who she would quickly learn was also responsible for the Santa Train.

Within 20 minutes of that discussion, Cherlyn already had 20 volunteers lined up and she began asking for more volunteers on her Facebook page to help make the Santa Train event a reality for Cure 4 The Kids Foundation patient families.

Cherlyn did not win her seat to become a member of the Nevada State Legislature. Even worse, the benefactor who had agreed to underwrite the Santa Train event had called to say they could not honor their original commitment to fund the event. Cherlyn did not give up.

She had a heart to heart talk with her family. Her children agreed to give up their Christmas presents so the Santa Train event could go on as planned. She enlisted the support of her friends who donated money to buy additional gifts for patients who would ride on the train. Although Cherlyn didn’t anticipate she would find herself trying to fund the event at the last minute, she believes the angels always had her back.

Despite the bumps and detours and sacrifices leading up to the initial Santa Train event, Cherlyn is determined to make this an annual event.  It made us wonder why this particular event is so important to her.

“We need to celebrate life,” she Cherlyn. “When you have a sick child or a child that is not perceived to be “normal” by others, you need to celebrate every single day with that child.  This is one way for us to do help do that,” she said.

We sincerely thank Cherlyn and her family for going above and beyond to help make the Santa Train event a memorable one for our patient families.