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

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

Circus Couture Fashion on Las Vegas Now

As Cure 4 The Kids Foundation’s signature fundraising event approaches, representatives of Circus Couture: Metamorphose appeared on Channel 8’s Las Vegas Now program to talk about Circus Couture fashion!  Our thanks to 8 News Now for having us!

https://www.8newsnow.com/news/las-vegas-now/circus-couture-fundraiser/

Cuts-4-The-Kids Happening Sunday, September 15, 2019!

The public – and first responders – are invited to get a haircut on Sunday, September 15, 2019, at Mosaic Salon at Boca Park. This simple act will raise funds for Cure 4 The Kids Foundation’s Charity Care Program which ensures patients without medical insurance or who are unable to pay for services still receive treatment.

For the 10th year, Mosaic Salon is hosting Cuts-4-The-Kids with all stylists donating their time so that all proceeds from haircuts and other salon services go to Cure 4 The Kids Foundation.

“We do not turn patients away from treatment for financial reasons,” said Annette Logan-Parker, president & CEO, Cure 4 The Kids Foundation.  “One of the ways we keep that promise is by having fundraisers – such as Cuts-4-The-Kids – that help us fund our Charity Care Program which has helped hundreds of families in our community.” 

Appointments are being accepted for Sunday, September 15, 2019, between 10 a.m. and 2 p.m.   Appointments can be made by calling 702-373-2108 or by going online to //bit.ly/Cuts4TheKids2019 and booking your own appointment.

This year, Cuts-4-The-Kids is encouraging first responders to join in the effort and get their haircut. All law enforcement, firefighters, ambulance companies and others are strongly encouraged to make an appointment. 

Services being offered at Cuts-4-The-Kids include:

• Women’s haircut $45 (includes blow-dry)
• Men’s haircut $25
• Children’s haircut $20
• Eyebrow Waxing $15
• Manicure $25
• Pedicure $45
• 15-minute chair massage $15


Mosaic Salon at Boca Park is located next to Total Wine in Boca Park, at 730 S. Rampart Boulevard, #110, Las Vegas, NV 89145.

Gwen Stefani: Partnering with Cure 4 The Kids is a Perfect Match!

Gwen Stefani sits down with Travelgirl magazine to talk about her residency in Las Vegas, fashion, traveling, The Voice and Cure 4 The Kids Foundation!

Read the interview in Travelgirl magazine

We think you may already know this, but we are so appreciative that Gwen donates $1 from every ticket to her Las Vegas Shows — so go see her!

Cure 4 The Kids Foundation Announces Community Advisory Council

Cure 4 The Kids Foundation announced it has created a community advisory council to help advance the mission of the organization through fundraising and strategic planning.

The council began with three new members, and is seeking additional members who can provide support to the organization.

Read more in Nevada Business

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)

Cure 4 The Kids Foundation Adds Three New Board Members

Cure 4 The Kids Foundation is pleased to announce the addition of three new members to the board of directors.

Dr. Renee Coffman, Farhan Naqvi, and Cory Frey join the existing four directors to provide oversight and input that will help guide Nevada’s only nonprofit outpatient treatment facility for those diagnosed with childhood cancer and other catastrophic conditions. The new board members include:

Dr. Renee Coffman, BS Pharm, PhD., is president and co-founder of Roseman University of Health Sciences, a nonprofit, private institution of higher learning that is training the next generation of undergraduate and graduate-level health care professionals. Roseman University includes the College of Dental Medicine, College of Pharmacy, College of Nursing, and the future College of Medicine. A licensed pharmacist in the State of Nevada, Dr. Coffman has worked to support pharmacy, education and improved healthcare within Nevada. She is a member of the American Association of Colleges of Pharmacy, American Pharmaceuticals Association, American Association of Pharmaceutical Scientists and several other pharmaceutical associations. Dr. Coffman was instrumental in successful legislative efforts permitting pharmacists to perform finger-stick blood glucose testing. Dr. Coffman has also been recognized among the “Who’s Who in Healthcare” Award and “Women of Distinction Award,” both sponsored by Greenspun Media Group.  She was also recognized in 2016 in Nevada Business Magazine’s “Women to Watch.”

Farhan Naqvi is the founder and managing partner of Naqvi Injury Law. Mr. Naqvi is one of Nevada’s most successful personal injury attorneys and has achieved more than $200 million for his clients in verdicts, settlements, and judgments. Since 2003, Mr. Naqvi has represented more than 5,000 clients, with litigation cases before the Eighth Judicial District Court of Clark County, Nevada, and the United States District Court, District of Nevada. Founded by Farhan and Ellie Naqvi, the firm has been named Gold Winners in the Best of Las Vegas program for Best Law firm, Best Customer Service and Best Personal Injury Attorney for several years. Naqvi Injury Law places a strong emphasis on supporting the community at large, through many volunteer and fundraising activities. In addition to support of Cure 4 The Kids Foundation, the firm has supported HELP of Southern Nevada and the American Cancer Society among many others.

Cory Frey is president of Frey Insurance and Benefits, LLC, in Las Vegas, Nevada. The company is licensed with the State of Nevada to manage commercial risk in Life and Health Contracts.  His practice primarily focuses on the management of medium to large group health employee benefit plans.  Mr. Frey’s experience working in commercial insurance, as well as a decade in the regulated banking sector, provides him with extensive understanding in the areas of credit capacity, cash flow, risk management, and entrepreneurship. When not working, Frey volunteers with the Clark County School District’s Professionals and Youth Building A Commitment (PAYBAC) Program and also speaks with at-risk student populations throughout the year. He also coaches multiple youth sports teams as well as managing a 501c3 registered 14u club baseball organization.

Las Vegas Review-Journal