Hablo Espanol = I Speak Spanish

Hablo Español = I speak Spanish.

For a significant number of our patient families, the challenge of fully understanding medical treatments and sometimes complicated explanations are even more difficult. That’s because either the patient or family members speak a native language other than English.

As a medical facility, this issue is vital because clear communication with patients and their families is essential to everything we do.

It was an employee who approached Patient Experience Director Katherine “Kat” Salkanovic that triggered an idea to help address the needs of these families. After hearing the concept, Kat wondered, could something as simple as a button that says Hablo Español help?

It turns out it did!

Salkanovic says she’s had patient family members come to her with tears in their eyes thanking her for identifying those employees who can assist them in the Spanish language.

“We have a lot of patients who speak Spanish, and we know that having the ability to speak to someone in their native language is helpful, reassuring, and builds trust. We also have many employees who speak Spanish. Still, there was nothing suggesting they speak Spanish – so this was an easy way to let our patient families easily recognize those who can help them,” said Salkanovic.

There are about 20 employees who wear buttons. They include nurses, medical assistants, and providers, and you’ll find them throughout the clinic, including the front desk, and at check-out.

For those patient families who speak a language other than Spanish, Cure 4 The Kids Foundation also provides access to a translation program that offers language assistance for medical appointments in more than 200 different languages. Anyone with questions about this service can learn more when they check-in at the front desk.

Meet Katherine Salkanovic, Director of Patient Experience

Meet Katherine Salkanovic, Director of Patient Experience 

Some of our best employees at Cure 4 The Kids Foundation have had the opportunity to grow in their careers at the same time our organization has grown.

A perfect example of this kind of opportunity can be found in our Director of Patient Experience Katherine Salkanovic, who often goes by Kat.

Did you know Kat originally wanted to be an accountant? In fact, in one of her first positions in the organization in Credentialing, she was shadowing Christine Tonn, the chief financial officer of Cure 4 The Kids Foundation, to whom she also became the Executive Assistant. Although Accounting was her focus at that time, the more she learned about the organization, the more she knew her future was about to change.

Cure 4 The Kids: Accounting is what originally brought you to Cure 4 The Kids Foundation.  What was it about our organization that made you think you might want to be involved in other areas?

I was drawn to Cure 4 The Kids Foundation from the start. Prior to joining C4K, I worked for over 8 years at another non-profit cancer center. When they were forced to close their doors, I knew I wanted to stay in the non-profit sector, and I knew it had to be a cancer clinic. 

You see, I lost my dad to cancer when I was 22 years old, and we had a very traumatic and negative experience. Since that day – I promised to myself that I would do everything in my power to change the way Patient Experience is delivered – I wanted to change the world. I saw C4K as the place where I could do it and make a difference. This is a place that was built around an experience, and excellence was their goal. I wanted to be a part of the place that set the bar so high. There was nowhere else I wanted to be! While I did have an Associate’s in Accounting from Santiago, Chile, I was unable to transfer my credits here. For me, Accounting was the easy path, but I learned very quickly that I belonged somewhere else.

Cure 4 The Kids: You had some heart-to-heart talks with CEO Annette Logan-Parker about your future when you understood that accounting may not be your ultimate career goal.  What advice did she give you and what actions did that lead to?

 I just can’t say enough about Annette. She’s such an amazing leader, but also, she’s such wonderful human being. She has the gift to see into people’s souls, and she astonish us all with her ability to see the best in people every time.

I swear, she knew what I wanted, before I knew it myself.

She knew about my dad and about my calling, so she asked me “what do you want to do” and I responded, “I want to change the world”. She understood, so she helped me with a path that could make me run the department where we get to make the all changes that affect Patient Experience – we get to change the world!

Annette encouraged me to pursue my bachelor’s degree (which I switched careers to healthcare management!), and become a Certified Patient Experience Professional. I was the second person in the state to hold this very prestigious certification.

Cure 4 The Kids: You were Cure 4 The Kids Foundation’s first-ever Patient Experience Manager, and now you are the director of that department. In many ways, this position seems like it was tailor-made for you.  What it is about your job you find most satisfying?

 

It does feel like this role was tailor-made for me.

Having had a very negative experience when my dad got diagnosed with cancer and later when he lost his battle to this horrible disease gave me a front row seat to “what not to do”. I don’t want any family or patient to go through what I went through.

What I enjoy the most about my job is that I get to spend my days with the most amazing kids in the world. Getting to create policies and procedures that makes their visit a positive experience its just a plus.

Knowing that we are educating families on what to expect from a healthcare provider and to not accept any less is truly rewarding. Families deserve to receive the best care possible, with compassion, empathy, and respect – and in a language they can understand.

It is my job to build that trust, and it’s a job that I treasure with everything within me.

Cure 4 The Kids: You recently earned your Master’s in Business Administration degree with an emphasis in Healthcare.  It’s tough to work full-time, manage a family at home, and pursue a degree.  It’s also a great accomplishment! Do you have advice to others who may be thinking about obtaining additional education while balancing a lot of responsibilities?

 It was tough, I am not going to lie. And there were times where I wanted to give up, specially after failing one of my classes. I remember walking into Annette’s office and telling her that I was deeply disappointed in myself because I had failed my final statistics exam. She gave me a warm smile and said “that’s great Kat! Failing builds character, and in the long run, this will make you a better leader! Did you know that the most successful bankers are hired because they have failures documented on their careers? Get up, dust yourself off, and do it again!”

So, my advice is: Don’t stop. It’s ok to fail, but its not ok give up. It will be hard, and it be challenging – but truly, all the best things in life are too.

Cure 4 The Kids Note: Katherine was chosen to be a featured speaker at the upcoming Next Generation Patient Experience Annual Conference. This virtual gathering of America’s top minds is aimed at sharing ideas, networking, and learning about the latest technology that are improving patient experience in the medical field.

Welcome, Mary Lehoux! Cure 4 The Kids Foundation’s Registered Play Therapist

Many of you have probably seen Mary around the clinic. We wanted to officially welcome her to Cure 4 The Kids Foundation and find out a little more about the services she provides to patients. Mary’s title is behavioral health counselor, however, her license, credentials, and training allow her to provide specific practices and tools that we know will be immensely helpful to many of our patients.

Mary is a licensed clinical professional counselor (LCPC) and a registered play therapist (RPT). She graduated with a Master of Arts degree (M.A.) in Clinical Psychology, so her credentials appear after her name like this: Mary Lehoux, M.A., LCPC, RPT.

Play therapy may not be as well known as other forms of therapy, so we wanted to gain a greater understanding of the practice and how it can benefit patients.

Cure 4 The Kids Foundation: Play therapy may be somewhat new to patients and parents. Can you help us understand the purpose of play therapy and how it helps a patient?

Mary Lehoux: Of course! In simple terms, child play therapy is a way of being with the child that honors their unique developmental level. In my play sessions, I therapeutically use play to assist in addressing the goals of each patient (most often children ages three to 12 years) and their family, to help them improve their ability to express themselves and resolve their problems.

For those seeking a more clinical explanation: the Association for Play Therapy defines play therapy as “the systematic use of a theoretical model to establish an interpersonal process wherein trained play therapists use the therapeutic powers of play to help clients prevent or resolve psychosocial difficulties and achieve optimal growth the development.”

Cure 4 The Kids Foundation: How is play therapy different from regular play?

Mary Lehoux: Play therapy differs from regular play in that the therapist helps children to address and resolve their problems. Through play therapy, children learn to communicate with others, express feelings, modify behavior, develop problem-solving skills, and learn a variety of ways of relating to others.

Cure 4 The Kids Foundation: In your opinion, why can play therapy be more advantageous than talk therapy?

Mary Lehoux: Play therapy is an evidence-based approach that is ideal for most young children because it is a way of delivering therapy in the “language” of the child (play). So, in the same way that talk therapy is a helpful way for some patients to communicate and process experiences, play therapy is another way to communicate and process these experiences at the level of the child. Play therapy also benefits patients by providing a safe psychological distance from their problems and allows expression of thoughts and feelings appropriate to their development.

Cure 4 The Kids Foundation: How do you see your skills being helpful to patients?

Mary Lehoux: I engaged in extensive training and supervision to acquire the Registered Play Therapist credential. My background and training in play therapy includes both non-directive and directive approaches, which enables me to offer our patients and families a therapeutic setting that provides a sense of control, fosters freedom of expression, and teaches skills that promote emotional well-being and healing.

Cure 4 The Kids Foundation: Are you able to assist families of patients as well?

Mary Lehoux: Amanda Hope Rainbow Angels is the organization that has made this service possible, and allows me to provide therapy for any of our patients AND their family members. Amanda Hope’s mission made accessibility to therapy a priority for all children and families involved in our clinic.

Cure 4 The Kids Foundation: If a parent is interested in learning more about play therapy and whether it may benefit their child, what is the best way to reach out?

Mary Lehoux: Parents can reach out to their providers, or anyone in the clinic, and ask for Mary Lehoux. I can provide parents with informational brochures that detail more information about play therapy. Parents can also look online at www.a4pt.org for more information. I am in the clinic during regular business hours. I can often visit with patients and their families during their clinic visit, and help determine if play therapy would be beneficial for them.

Cure 4 The Kids Foundation: Thank you!

As Mary mentioned, Amanda Hope Rainbow Angels underwrite the cost of this incredible resource for patients of Cure 4 The Kids Foundation and their families. We wanted to find out a bit more about the organization and why they feel Mary’s services are so important. We spoke with Lorraine Tallman, who is the CEO and Founder of Amanda Hope Rainbow Angels, based in Phoenix, Arizona, and Kelley Nemiro, Chair of the Amanda Hope Rainbow Angels Nevada Advisory Committee.

Kelley: We wanted to provide Cure 4 The Kids Foundation access to a play therapist because we believe that healing goes so much further beyond the physical. With childhood cancer, the entire family takes a huge hit mentally and emotionally, and we wanted to make sure that all members were cared for, seen, and heard throughout the treatment journey.

Lorraine: I’ve met many Nevada warriors in Phoenix who were getting transplants and treatment. I have friends in Nevada as well, and I discovered our programs could bless several thousand children. Amanda, whose childhood cancer journey prompted the creation of our organization, dreamed of “Dignity and Respect” for patients like her, and advocating that “all questions are good” as a result of her experience. She felt it was important that patients have the coping skills to fight fear and to know that you have an entire community by your side your entire journey.

Cure 4 The Kids Foundation: We’ll encourage everyone to find out more about Amanda Hope Rainbow Angels by going to your website, but help us understand a little more about Amanda.

Lorraine: Amanda knew that connections with other warrior families was critical, and making the most of everyday was important – including planning a memory for each day. It could be planning a play date, a weekend away, working on crafts, a shopping day to use a gift card that was given to her, or spending time with friends that would come to see her or she would visit another child. Amanda was all about recognizing the small victories every day. Wake up every day- get dressed- believe and hope- smile- find laughter. Pray and listen to happy music. Every little thing helps.  Amanda would say, “Big hugs,” and her sweet hug could bring me through anything.

Kelley: My experience in working with Amanda Hope Rainbow Angels and learning about Amanda is that in any time of difficulty, slowing down and taking joy and gratitude in the little things can always bring light to a dark situation. Having faith and hope is so important.

Cure 4 The Kids Foundation: I was surprised to learn that despite all the challenges going on with her cancer journey, Amanda was also thinking about how to provide patients a greater sense of dignity when undergoing chemotherapy.

Lorraine: Amanda hated her body being exposed to everyone in a chemo clinic, so she had a dream to have a tee-shirt with peek-a-boo pockets for all of the tubes that came out of her body. By having to lift or take off her shirt for all to see, there was a loss of dignity, and in many ways, Amanda felt that her voice was taken away. Her experience led to this: Comfycozy for Chemo. It empowers our children to have a choice in their care, and in some cases has allowed for fewer drugs needed to calm patients down when their port is accessed. Voice and choice is a fantastic gift to a child who is fighting for their life.

Kelley: Through the shirt, we feel we are creating a situation that upholds dignity and respect for the children. The zippers at the collar provide easy port access, so the child does not have to undress to get labs drawn or have a treatment done. They also come in a bunch of fashionable styles for children of all ages.

Cure 4 The Kids Foundation: Thank you for all you do to support Cure 4 The Kids Foundation!

Learn more about Amanda Hope Rainbow Angels

Patients can apply for a Comfycozy for Chemo shirt

Dr. Alan Discusses Research

When it comes to childhood cancer and many other life-threatening conditions, research has been at the forefront of bringing more effective treatments and better patient outcomes.

Cure 4 The Kids Foundation is dedicated to participating in clinical research if it is in the best interest of the patient, and if it helps patients in the future.

With that in mind, we spoke with Cure 4 The Kids Foundation’s Chief Medical Officer, Dr. Alan Ikeda about some research basics:

C4TK: Is there a difference between a clinical trial and a protocol?

Dr. Alan: The purpose of the clinical trial may be to determine the safety, efficacy, or a comparison of  particular medications or treatment regimens.

A protocol relates to the instructions on how to run a clinical trial. If the clinical trial is completed, then the protocol may still be utilized as a guideline to treat patients who have the target disease. For example, the protocol would dictate when you do a check-up on the patient involved in the clinical trial, or when you check their labs, when to give what chemotherapy, etc.

C4TK: There are different phases of clinical trials, can you help explain?

Dr. Alan: A phase 1 clinical trial determines the safety of a treatment or medication.  Before a drug gets to a phase 1 clinical trial, it has passed a level of testing to determine that it should progress to the phase 1 stage. These are often first in human testing of a drug. Previous testing can include testing at the molecular or cellular level and even with human tissue models — or a combination of all. According to the FDA, a phase 1 clinical trials are usually limited to 20 to 100 participants.

If the phase 1 trial is deemed successful, it moves onto phase 2.  A phase 2 trial involves a larger group of people —  up to several hundred — and the study can be up to two years in length. What researchers continue to focus on is whether the medication is safe and whether it is having an effect on the patient’s condition. There are often Phase I/II trials that combine testing the safety and efficacy. This format has been beneficial to advance the progress of medicine to get new medications on a quicker track to the bedside.

If successful in phase 2, the clinical trial moves onto phase 3. The vast majority of interventional clinical trial participation by oncology patients at Cure 4 The Kids Foundation are  in phase 3 trials.  In phase 3, there can be as many as 3,000 patients in the study and it may continue for  years. Researchers are continuing to monitor the effectiveness of the medication and check for any adverse reactions.

C4TK: Do you always recommend a patient participate in a clinical trial if they are eligible?

Dr. Alan: It certainly depends on the study as to whether I would recommend a patient to participate. We do evaluate the scientific value of each study before we ever decide to open a trial at Cure 4 The Kids Foundation. There must be some reasonably attainable and meaningful research goals for us to participate. We also want to be certain we will be able to collect data and have an outcome that we can measure — otherwise, there is no sense in participating. If it meets those goals, we will encourage patients to take part.

One reason we can treat and cure so many patients is due to clinical trials of the past. If you look back to just before I was born in the 1960s and 70s, the chances for a cure in children’s cancer were very poor — much less than 10 percent.  Now we have an overall cancer cure rate of about 85 percent for all Pediatric Oncology patients.  That is a direct result of clinical trials.

C4TK: These clinical studies often originate out of large teaching hospitals in large metropolitan centers.  Will Cure 4 The Kids Foundation ever develop a clinical trial of its own?

Dr. Alan:  Part of our mission and vision at Cure 4 The Kids Foundation is to advance medical technology. We plan to continue participating in clinical trials but also would like to develop new things here.

We have a collaborative venture with Roseman University of Health Sciences. I would like to build our program so that we can have academicians, including bench and translational researchers join our program. We look forward to having some collaborative efforts with Roseman and have new, cutting edge, and innovative studies here in Las Vegas.

C4TK: Can you define bench research?

Dr. Alan: Bench research looks a lot like what people may see on television, including working with beakers and flasks in a laboratory. Often, it will include working with genes, molecular pathways, or cellular level testing and looking at things farther away from the human being.  These are things that are typically done on the lab bench and thus the term: bench research. It may also be referred to as basic research or wet lab.

You can find additional information about the clinical studies Cure 4 The Kids Foundation patients are currently involved with by going to cure4thekids.org/research page

Important Sickle Cell Bill Signed by Governor Sisolak

Sickle cell disease (SCD) got quite a bit of attention during the most recent Nevada legislative session. As a result, SCD patients will have protections that will help ensure they receive proper treatment around the state, and the incidence of sickle cell disease and those that carry the trait will also be tracked in the state.

Assemblywoman Dina Neal (Nevada’s 7th District) sponsored and worked to gain support for AB 254 which was signed by the Governor on June 3, 2019. We had the chance to speak to Assemblywoman Neal about the experience and how it will help Nevadans.

Cure 4 The Kids: How did you become aware of the need for services for those with sickle cell disease?

Assemblywoman Neal: After the 2015 Legislative session ended, I was talking with Clark County Commissioner Lawrence Weekly who has a nephew with sickle cell disease. His opinion was that we had very little care available for those affected by SCD and he asked if I would look into the issue. Since that time, I’ve been doing research on my own about how the disease affects people and what can be done about it, as well as looking at some of the available treatments. I also learned about the Pacific Sickle Cell Regional Collaborative (PSCRC) which is how I got in touch with Dr. Rashid.

(Editor note: The Pacific Sickle Cell Regional Collaborative is a program of the U.S. Department of Health and Human Service’ Health Resources and Services Administration. The program is aimed at improving medical treatment fo sickle cell patients. As a PSCRC member, our providers, including Dr. Rashid, reach out to medical facilities, hospitals and clinics in Nevada offering education, information and collaboration on sickle cell disease treatments.)

I also had a few meetings with several managed care organizations (MCOs) and tried to build what would become a bill around the things they could do for sickle cell patients that wouldn’t necessarily cost them money. I tried to blend what I heard from patients and what I heard from MCOs, as well as Dr. Rashid and others and that’s how I came up with AB 254. When the 2019 legislative session began, I prepared to carry the bill.

Cure 4 The Kids: The legislative process can be tough, did you get any push back against this bill?

Assemblywoman Neal: I feel really positive about it. It is a small sector of the population that is affected by this, but I think the time I spent speaking with MCOs and other health organizations was good. To be very honest, I think I helped educate some of the managed care companies on the disease implications for sickle cell patients. I’m glad I was in a position to be able to do that because that will lead to better care for sickle cell patients in the future.

There were some pushbacks, though. A few managed care organizations didn’t like the idea of unlimited refills. I asked them how many sickle cell patients do you have? They told me none. I thought it was very odd that they were objecting to something for patients that they don’t even serve.

There was no question the bill would get out of the Assembly. The Senate is always another story since, historically, that is where lobbyists will frequently try to amend the bill on behalf of their clients. Thankfully, the bill had great support int he Senate, including from Senator Julia Ratti (Washoe County) who had her own bill requiring newborns be tested for SCD at birth. She really stuck with me and didn’t budge with lobbyists and that helped get the bill through the Senate.

Cure 4 The Kids: What do you feel is the most important aspect of AB254?

Assemblywoman Neal: The fact that we have comprehensive care for sickle cell patients in Nevada is a first. That’s not something that has ever existed before around the state. We’ve created a pathway so that when a patient enter the system (doctor or medical clinic or hospital) they will be managed and someone will be following their case — that’s new. Once they arrive at a hospital they cannot be misdiagnosed or mistreated and we will build a registry around these patients and document what is happening to them.

We also asked Cure 4 The Kids Foundation’s Dr. Nik Abdul-Rashid, who oversees the clinic’s Sickle Cell Treatment Center about the important aspects of the bill:

Dr. Rashid: The common theme that I hear from patients and their families is that there is a general lack of understanding of sickle cell disease.  That misunderstanding appears at all levels — from the hospital where a patient may need to seek treatment for severe complications, to the providers who see a sickle cell disease patient and who may not be aware of the current and improved treatments. Outside the medical community, it can also be a big issue.  Those who are unfamiliar with sickle cell disease — which can include educators and even other students — may begin to view those affected by the disease differently which can lead to bias in many different ways. I think it is vital that we work to educate people at all levels in our community about what sickle cell disease is, and what it is like for people living with this condition.  This bill – AB254 – is a great step in that direction.

Since 2007, Cure 4 The Kids Foundation has provided treatment to sickle cell patients. In 2016, Cure 4 The Kids Foundation significantly changed its treatment to include a more comprehensive approach, leading to the creation of the Sickle Cell Treatment Center of Nevada. Under the direction of Dr. Rashid, sickle cell patients from birth to 18 years of age, as well as established adult sickle cell patients, receive comprehensive care in addition to any more immediate health needs.

Comprehensive clinics provide a more detailed analysis of a patient’s medical and psychosocial needs and ultimately better treatment.

  • The comprehensive clinic team includes:
    Board-Certified Pediatric Hematologist
    Pediatric Nurse Practitioner/Sickle Cell Comprehensive Clinic Coordinator
    Pediatric Neuropsychologist
    Social Worker
    Education Specialist
    Child Life Specialist
    Clinical Research Associate
    Registered Nurse

If you would like to learn more about sickle cell disease treatments at Cure 4 The Kids Foundation, or to schedule an appointment, please call 702-732-1493.

AB 254 Summary:

Requires Nevada’s Chief Medical Officer to establish and maintain a system for reporting sickle cell disease and its variants; also authorizes administrative penalties for failing to report certain information.

Requires testing newborns for the presence of sickle cell disease and its variants; allows for parents to be tested at same time.

Requires Medicaid to cover certain supplements recommended by the Pharmacy and Therapeutics Committee which can be helpful to sickle cell patients.

Requires a health insurer to include coverage for certain prescription drugs and services for the treatment of sickle cell disease.

Authorizes a prescription of certain controlled substances for the treatment of acute pain caused by sickle cell disease and its variants for a longer period than otherwise allowed.

You can read the entire bill here.

Summerlin Hospital Announces New Pediatric Hematology/Oncology Unit

While our greatest hope is that a child never requires hospitalization, it does become necessary at times for some patients. Earlier this year, Summerlin Hospital dedicated its new Pediatric Oncology Unit and our own Chief Medical Officer, Dr. Alan Ikeda and Cure 4 The Kids Foundation CEO Annette Logan-Parker helped to cut the ribbon!

This was also the perfect opportunity for us to catch up with Dr. Alan to find out more about Summerlin Hospital’s new unit and his new interim position.

Cure 4 The Kids Foundation: Tell us about the new Pediatric Hematology / Oncology Unit.

Dr. Alan: The unit is important because it is designed to provide a safe environment for the special population of children whom we treat. It also allows for a nurturing environment with consistent exposure to the special circumstances that our population faces.  This, in turn, fosters the unit staff to become specialized in their skills to be proficient in the care of Pediatric Hematology/ Oncology patients.

Cure 4 The Kids Foundation: We just learned you accepted an interim position at Summerlin Hospital?

Dr. Alan: I accepted the position of Interim Chair of Pediatrics at Summerlin Hospital.  In this position, I will provide oversight of the various Pediatric programs at Summerlin Hospital, Pediatrics, Pediatric Hematology/Oncology, Neonatal Intensive Care Unit, Pediatric Intensive Care Unit, Labor and Delivery, and the Pediatric Emergency Room.  There are many great leaders in each of the divisions, as well as administrators, which makes the position a lot easier.  We hope to continue to build on the current program to bring more cutting edge medical technology to our city and state.

Cure 4 The Kids Foundation: That sounds great for our community, but does this mean you are planning to leave Cure 4 The Kids Foundation?

Dr. Alan: This does NOT mean I am leaving.  By taking this position, I believe it allows for better collaborations between Cure 4 The Kids Foundation, Summerlin Hospital and health practices in the community.  So I think it’s good news for our patients.

Thanks Dr. Alan!

(Pictured: L to R, Robert Freymuller, CEO Summerlin Hospital, Kathryn Beardshaw, RN, Pediatric Manager, Summerlin Hospital, Catherine Tonn, CFO, Cure 4 The Kids Foundation, Alan Ikeda, M.D., Chief Medical Officer, Cure 4 The Kids Foundation, Annette Logan-Parker, President & CEO, Cure 4 The Kids Foundation)

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.

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.

The Story Behind November’s Santa Train Event

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.

Cherlyn Arrington
Photo credit: Karelin Gonzalez Photography

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.