Intermountain Health’s Primary Promise campaign has inspired more than $642 million in community gifts to build the nation’s model health system for children, making it the most significant investment ever made in the health and wellness of children in Utah.

Led through Intermountain Foundation, the transformative five-year Primary Promise campaign exceeded its original goal of $500 million to bring its vision to life through a vital partnership between Intermountain Health and philanthropic members of the community.  

The Primary Promise campaign culminated in a special celebration and announcement that engaged Intermountain Health caregivers and leaders and patient families – including the child receiving Utah’s first fetal surgery while still in her mother’s womb.

She’s now 4 years old and thriving.

"We are grateful for the Intermountain Foundation’s leadership, and the community’s support of Primary Promise, which has transformed how Intermountain Children’s Health cares for our children, created stronger systems of support, and helped every child we serve live their healthiest life," said Mandy Richards, RN, chief nursing executive at Intermountain Health and president of Intermountain Children’s Health. “Our community and generous donors have built a legacy of commitment that opens doors for children in our care today, and for those who will rely on us tomorrow to overcome their challenges and reach their full potential.” 

Primary Promise is the single largest philanthropic initiative in Intermountain Health’s 50-year history. The multi-faceted plan addressed three goals:

• Strengthen Intermountain Primary Children’s Hospital.
• Address the emerging needs of children.
• Extend access to comprehensive pediatric care to more communities across Utah and the Mountain West.

As the campaign progressed, so did its financial target – from $500 million to a minimum of $600 million – a bold shift in response to community calls for more behavioral health services that ultimately created the new Intermountain Primary Children’s Hospital Behavioral Health Center, Taylorsville Campus.

Primary Promise goals also were addressed by providing robust fetal care including fetal surgery; expanding autism services, lifelong child health and safety initiatives, personalized medicine, and telehealth access to pediatric care; redesigning newborn intensive care and cancer spaces in Intermountain Primary Children’s Hospital, Salt Lake Campus; and by opening a second hospital campus, named the Larry H. & Gail Miller Family Campus, in Lehi, Utah.

Primary Promise was led by four civic and community business leaders:

• Gail Miller, founder, owner, and past chair of Larry H. Miller Company, and chair emeritus of the Intermountain Health Board of Trustees.
• Crystal Maggelet, chair and CEO of FJ Management Inc. and Intermountain Health trustee emeritus.
• Steve Lund, co-founder and executive board chair of Nu Skin Enterprises.
• Spencer Zwick, co-founder & managing partner of Solamere Capital.

“Primary Promise is about being part of something greater,” Lund said. “To everyone who gave in memory of a loved one — as our family has — our hearts are with you, today and always. And your gifts have made a profound difference that honors those we love. Who could ask for a brighter legacy?”

Abigail Rose is a living legacy of Primary Promise.

In 2021, she became the first child ever to receive an in-utero fetal surgery in the state of Utah, through what is now called the Grant Scott Bonham Fetal Center at Intermountain Primary Children’s Hospital. Previously, this complex and often life-saving surgery was available at only a few hospitals nationwide.  

When Abigail Rose’s mom, Alisha, was pregnant, an ultrasound showed that her fetus had spina bifida – a condition that leaves an area of the spine open and nerves exposed.

Doctors performed surgery on the fetus to address the anomaly. At the time, Alisha was around 25-weeks gestation. That gave time so the fetal spine could heal as part of its natural development. 

A month after fetal surgery, Abigail Rose was born.

She has grown to become an energetic, happy, mobile 4-year-old, who lives with her family in Idaho Falls. She loves to play with her Barbies, ride horses, sing songs with her mom, dance with friends, and watch sports with her dad, Nick. Physical and occupational therapy has helped her to achieve milestones that her family never expected to see, from crawling to walking with a walker. 

“We took a leap of faith with fetal surgery, and they saved Abby,” Alisha says. “The future for Primary Children’s patients is already brighter because of our fetal surgery. It’s phenomenal to have this in our region. The people who gave to Primary Promise have helped more kids than they’ll ever know. Abby is living proof.”

Here’s how Primary Promise has helped kids and families:

Autism Services were added to address a rapidly increasing need.

• The Adaptive Care Program launched last year, supporting nearly 500 children with a developmental disability.
• Primary Children's Applied Behavior Analysis clinic opened earlier this year at Intermountain Riverton Hospital to support children with autism and their families. 

Behavioral Health

• Primary Children’s programs have grown by 78% in the last five years, providing care for 40% more children during that time.
• More than 10,000 children served in 2024.
• The new Intermountain Primary Children’s Hospital Behavioral Health Center opened in Taylorsville in the summer of 2025, with family-centered care, hospital and clinic programs, and a walk-in crisis center that’s always open. The State of Utah invested $25 million to help build the center.

Grant Scott Bonham Fetal Center is the first of its kind in the Mountain West and is Utah’s only comprehensive fetal care center, offering world-class treatment for high-risk pregnancies, including fetal surgeries.

• 2,000 patients are served each year.
• First fetoscopic laser ablation for twin-to-twin transfusion syndrome performed in 2023.

Healthy Kids keeps children safe and healthy in their homes and communities. 

• In 2024, nearly 900 families were referred to the Mom, Baby, and Family Home Visiting Program, which provided more than 550 home visits per month, to help families get off to a great start.
• 92,000 books were given to families through the Reach Out and Read Program during their well-child checkups.
• Triple the number of safety devices, such as infant car seats and helmets, were given to families in 2024.

Network of Care brings Primary Children’s care closer to home through telehealth visits with pediatric experts.  

• 450,000+ telehealth visits since 2021 have connected kids and families with pediatric care experts.
• More than half of the children seen in emergency telehealth visits last year were safely allowed to return home to recover, avoiding unnecessary hospital stays.
• The School-Based Telehealth program launched in 2023, allowing 96% of kids to receive care and return to class, saving an estimated 15,000+ days of school. 

Newborn Intensive Care: A modern, state-of-the-art Level 4 NICU provides newborn babies with the most focused level of specialty care.

• NICU rooms are designed for families to stay with their babies.
• Families who can’t be there in person can access Angel Eye Camera Technology – they did so 78,000 times last year – to check on their baby anytime, from anywhere. 

Personalized Medicine

• 150+ patients with complex medical conditions last year received rapid whole genome sequencing to speed up diagnosis and customize treatment.  
• 4,000+ patients received integrated genetic services in 2024.

Second Hospital Campus

The Intermountain Primary Children’s Hospital, Larry H. & Gail Miller Family Campus opened in Lehi in February 2024 to serve the rapidly growing pediatric population in southern Salt Lake County and Utah County. This new hospital provided exceptional care for the community during its first year, including the following:

• More than 18,000 patients visited the Emergency Department.
• More than 72,000 clinic visits.
• More than 14,000 patients stayed the night in the hospital closer to home.

Sorenson Center for Cancer & Blood Disorders is a redesigned cancer care space to provide cutting-edge, nationally ranked care at Primary Children's Hospital — Salt Lake Campus.

• 200+ children rang the bell to celebrate the end of their cancer treatment last year.
• 2 academic endowed chairs were created:
  • Ryan and Ashley Smith Presidential Chair
  • FIVE For the Fight Chair in Pediatric Cancer Research.

Teen-to-Adult Care gives teens skills and resources to live their healthiest lives into adulthood.

• The Primary Children's Hospital “You & I Health Club” supports teens as they move into adult care for diabetes, heart, and other chronic conditions.  
• 442 patients supported in 2024.

“Together we’re directly contributing to lifesaving and life-changing advancements for children everywhere,” Zwick said. “It’s truly an honor for us to help write the next page beyond the history of this revered cause.”

Intermountain Health’s work to build the nation’s model health system for children will continue. In Montana, specialty care access for children is expanding. In Nevada, Intermountain is creating a comprehensive campaign for children’s health with plans to build Nevada’s first standalone children’s hospital in Las Vegas.

 “With you, our donor family, we’ve created an enhanced environment to provide the best pediatric care in the world,” Miller said. “Our legacy is that we did not hesitate. And this work will continue to move forward. We invite every member of the community, within and beyond these walls, to partner with us, so that together, we will forever keep The Child First and Always.” 

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Intermountain Primary Children’s Hospital is opening a new specialized clinic in Riverton for children with autism, and is expanding services thanks to a $3 million gift from a Utah businesswoman and philanthropist and her family in support of the Primary Promise campaign to build the nation’s model health system for children.

The new Applied Behavior Analysis (ABA) Clinic is now open at the Primary Children's Outpatient Services building at Intermountain Riverton Hospital. The opening marks a major milestone in expanded autism services for children and helps meet a rapidly growing need in the community.

“We want children with autism and their families to know that we’re with you on this journey,” said Katy Welkie, chief executive officer of Intermountain Primary Children’s Hospital and vice president of Intermountain Children’s Health. “With expanded autism services, we can help children thrive.”

“None of this would be possible without our generous community, helping turn bold visions of building a model health system for children into reality. We’re so grateful,” Welkie added.

Autism spectrum disorder is a neurodevelopmental disability that manifests in differences in behavior. Nationally, 1 in 36 children have autism spectrum disorder. That equates to about 25,000 children in Utah.  

Historically, there’s been a care gap in Utah and surrounding states, meaning there aren't enough programs for families to receive care quickly, or providers who can diagnose autism, evaluate developmental disabilities, and provide services and treatments to children. 

Intermountain Primary Children’s Hospital is helping close this gap by expanding services, including the new Applied Behavior Analysis Clinic at Intermountain Riverton Hospital.

“We’re proud to bring world-class pediatric care close to home for so many families in partnership with Intermountain Primary Children’s Hospital,” said Todd Neubert, president of Intermountain Riverton Hospital. “Together we’re ensuring that every child has the opportunity to thrive. And today, our story begins an exciting new chapter.”

The Applied Behavior Analysis Clinic provides vital services, including early intensive services such as behavioral assessment, individual therapy, and group therapy services for children ages 2-6 years old.

The clinic is part of Intermountain Primary Children’s Hospital’s multi-year effort to improve services for children diagnosed with autism.

“This is a huge milestone in our ability to help children with autism who have complex needs,” said Casey Clay, MD, incoming program director of ABA Services for Intermountain Children's Health. “It’s completely natural for parents to feel overwhelmed after an autism spectrum disorder diagnosis. But they’re not alone. With expanded services and the new ABA center, we can help families better connect to the supports and treatments children need to reach their full potential.”

Expanded autism services are made possible through donations to Intermountain Health’s Primary Promise campaign to build the nation’s model health system for children.

Primary Promise, shared by Intermountain Health and community philanthropic support, has surpassed its $600 million fundraising target thanks to community generosity. As a result, leaders were able fund critical expansion of autism services.

“Autism services are crucial for healthy children and communities,” said Gail Miller, Primary Promise executive campaign cabinet co-chair, who is also a philanthropist, businesswoman and Intermountain Health Board Chair Emeritus. “With your help, Primary Promise is enabling life-changing advancements for children's wellbeing. I encourage every community member to join us in helping more children grow up healthier and feel supported.”

The Primary Promise campaign and plan to enhance children’s care inspired Sandi Summer Hendry, along with her family and company Minky Couture, to make a $3 million gift at the ABA Clinic opening. The donation marks Hendry’s second gift to Primary Promise; the first was $1 million donation to the Newborn Intensive Care initiative.

“It was an honor and blessing to give and help the Intermountain Primary Children’s Hospital Lehi campus NICU,” said Hendry, founder and chief executive officer of Minky Couture. “It will be my honor and privilege to contribute to autism services to help the thousands who are pleading for help as they face this diagnosis of their precious loved ones. Both donations are near and dear to my heart.”  

Support for expanded autism services is critical to supporting kids like Lily, a happy 13-year-old Utah teen who loves fashion and all things Taylor Swift.

Her smile lights up a room, and her family couldn’t be more grateful for the services and caregivers who helped her shine in the years following her autism diagnosis. 

“The first issue we had to overcome was anxiety – massive, debilitating anxiety – that was really preventing her from being who she is,” said her mom, Carrie. “I have found that the care providers here had such a focus on their job, which was not to hide who Lily is, and not change her personality, but to remove the anxiety so she could shine, and we could see who the real Lily is.”

Lily thanked both the Miller and Hendry families for seeing the needs of people with autism and supporting Primary Promise’s Autism Services expansion. She painted and gave an art piece for each family, then joined them in cutting the ribbon on the new ABA Clinic.

Her parents couldn’t be prouder.

“It’s amazing to have someone in your house who sees the world differently than you do, because we all think we see it the same,” said Lily’s dad, Roger. “She’s taught us how to see love, she’s taught us how to care about people, she’s taught us what’s important. She’s a gift.”

To learn more about Primary Children’s Autism Services, visit PrimaryChildrens.org/AutismServices. To donate, visit PrimaryPromise.org.  

 

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El Festival Anual de Árboles regresa al Centro de Exposiciones de Mountain America en Sandy del 4 al 7 de diciembre para traer la magia de las fiestas a la comunidad con cientos de hermosas muestras donadas para ayudar a los niños con necesidades en el Hospital Primary Children de Intermountain y más allá.

Una tradición navideña atesorada en Utah que ya celebra su 54.ª edición, el Festival de Árboles es presentado por la Fundación Intermountain y se lleva a cabo gracias a un consejo especial de 80 voluntarios de la comunidad.

En el festival, se exhibirán más de 550 árboles con hermosas decoraciones y más de medio millón de luces navideñas, así como coronas, pesebres, casitas de jengibre, edredones y 5000 libras del ya popular dulce cremoso del Festival de Árboles disponible en 51 sabores que estarán disponibles para la compra o durante la subasta silenciosa.

Quienes asistan al festival también podrán disfrutar de escones, música en vivo, presentaciones de baile, y visitar a Santa Claus y el Grinch.

Todos los objetos de la subasta o en venta en el Festival de Árboles están hechos a mano y fueron donados por miles de voluntarios talentosos de Utah y los estados vecinos. Muchos se hicieron en honor a amigos y familiares que son o han sido pacientes del Hospital Primary Children.

Todos los fondos recaudados se destinarán al Hospital Primary Children para brindar atención a los niños que la necesiten y cumplir con la promesa principal de Intermountain Health de crear un sistema de salud infantil ejemplar para la nación.

“La comunidad está marcando una diferencia en la vida de los niños al apoyar esta querida tradición navideña”, indicó Katy Welkie, directora ejecutiva del Hospital Primary Children de Intermountain y vicepresidenta de Intermountain Children’s Health. “Agradecemos a nuestros voluntarios por su compromiso con la prosperidad de los niños e invitamos a la comunidad a asistir al Festival de Árboles del 4 al 7 de diciembre”.

La generosidad de la comunidad que vemos en el Festival de Árboles ha contribuido para que niños como Ruby, de 11 años, puedan crecer bien.

Ruby es una alumna de sexto grado activa a la que le encanta nadar, tocar el violín, jugar al fútbol y escribir.

Pero cuando Ruby tenía 3 años, sus padres Ali y Mark se preguntaban si ella llegaría a cumplir 5 años.

Ruby fue al médico por una pequeña manchita blanca en la parte baja de la nuca que resultó ser cáncer y se propagó a sus pulmones. Uno de los tumores le apretaba el corazón.

Cuando la familia empezaba a considerar la atención para pacientes terminales, los médicos del Hospital Primary Children de Intermountain utilizaron en Ruby y su tumor una tecnología nueva para ese momento, la secuenciación rápida del genoma completo (rWGS, por sus siglas en inglés). Así pudieron identificar una nueva terapia dirigida contra el cáncer de Ruby.

Y funcionó. Los tumores en los pulmones de Ruby se encogieron en un 90 por ciento en pocos meses. “En la actualidad, no hay evidencia de la enfermedad, y hace tres años que ya no recibe tratamiento”, mencionó su mamá.

Ruby ahora está dando algo a cambio. Ayuda a otras familias del Hospital Primary Children sirviendo comida en la sala familiar de Ronald McDonald.

“El año pasado, el Festival de Árboles recaudó $3.4 millones para ayudar a niños como Ruby en el Hospital Primary Children de Intermountain”, explicó Janet DeWolfe, directora ejecutiva de la Fundación Intermountain en el Hospital Primary Children. “Invitamos a la comunidad a celebrar esta época de fiestas en el Festival de Árboles y a donar con generosidad para ayudar a los niños del Hospital Primary Children y mejorar la salud infantil en todo el estado y la región”.

Información del evento:

·         Las entradas están disponibles en FestivalofTreesUtah.org o en la puerta del Centro de Exposiciones de Mountain America en Sandy del 4 al 7 de diciembre. 

·         La subasta silenciosa de árboles, coronas, edredones y demás artículos se llevará a cabo en FestivalofTreesUtah.org a partir de las 6 p. m. del martes 3 de diciembre y hasta las 9 p. m. del miércoles 4 de diciembre. También habrá edredones y una selección de artículos navideños a la venta.

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NOTA PARA LOS MEDIOS: Vídeos e imágenes disponibles previa solicitud.

The annual Festival of Trees is returning to the Mountain America Expo Center in Sandy December 4-7, bringing holiday magic to the community with hundreds of beautiful displays donated to help children in need at Intermountain Primary Children’s Hospital.

A treasured Utah holiday tradition now in its 54^th year, the Festival of Trees is presented by Intermountain Foundation and brought to life by a dedicated 80-member community volunteer board.

The festival will feature more than 550 beautifully decorated trees twinkling with a half million lights, as well as wreaths, nativities, gingerbread houses, quilts, and 5,000 pounds of the locally renowned Festival of Trees fudge in 51 flavors – all of which will be available for purchase or bid at silent auction.

Festival attendees also can enjoy scones, live music, dance performances, and visits with Santa Claus and the Grinch.

All items for auction or sale at the Festival of Trees were handcrafted and donated by thousands of talented volunteers from Utah and neighboring states. Many are made in honor of friends and family who are or have been patients at Primary Children’s Hospital.

All funds raised will support Primary Children’s Hospital, provide care to children in need, and deliver on Intermountain Health’s Primary Promise to create the nation’s model health system for children.

“Our community truly is making a difference in the lives of children by supporting this beloved holiday tradition,” said Katy Welkie, chief executive officer of Intermountain Primary Children’s Hospital and vice president of Intermountain Children’s Health. “We are grateful to our dedicated volunteers for their commitment to helping children thrive, and invite the community to join us at the Festival of Trees December 4-7.”

Community generosity like that seen at the Festival of Trees has helped children like 11-year-old Ruby to thrive.

Ruby is an active sixth-grader who loves to swimming, violin, soccer and writing.

But when Ruby was 3 years old, her parents Ali and Mark wondered if she’d make it to her fifth birthday.

Ruby went to the doctor for a little white spot at the bottom of her neck. It ended up being cancer, and it had spread to her lungs, and one tumor was pressing on her heart.

Just as her family was considering hospice, doctors at Intermountain Primary Children’s Hospital used a then-new technology, rapid whole genome sequencing (rWGS), on Ruby and the tumor. That helped them identify a new, targeted therapy for Ruby’s cancer.

It worked. The tumors in Ruby’s lungs shrunk by 90 percent in a few months. “Now, there’s no evidence of disease, and she’s been off treatment for three years,” her mom said.

Ruby is now giving back, and helping other families at Primary Children’s Hospital by serving meals at the Ronald McDonald Family Room.

“Last year, the Festival of Trees raised $3.4 million to help children like Ruby at Intermountain Primary Children’s Hospital,” said Janet DeWolfe, executive director of Intermountain Foundation at Primary Children’s Hospital. “We invite the community to ring in the holiday season at the festival of Trees, and give generously to help children at Primary Children’s Hospital and boost children’s health throughout our state and region.”

Event information:

·         Tickets are available at FestivalofTreesUtah.org or at the door at Mountain America Expo Center in Sandy from December 4-7. 

·         Silent auction for trees, wreaths, quilts, and other items will be held at FestivalofTreesUtah.org from 6 p.m. Tuesday, December 3, through 9 p.m. Wednesday, December 4. Quilts and a selection of seasonal items also are for sale.

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NOTE TO MEDIA: Video and images available upon request.

Intermountain Health Unveils Sign at Site of Future Stand-Alone Comprehensive Children’s Hospital In Las Vegas

LAS VEGAS – Intermountain Health today unveiled the location for its future stand-alone children’s hospital in Southern Nevada at UNLV’s Harry Reid Research and Technology Park.

This afternoon at the future hospital site, leaders with Intermountain revealed a sign that reads: The future site of Nevada’s first stand-alone children’s hospital. 

“Intermountain Health recognizes comprehensive, subspecialty care for children close to home helps greatly reduce strain on families already burdened by emotionally and physically challenging health conditions,” said Mitch Cloward, president of Intermountain Health’s Desert Region, which includes southern Nevada and southwest Utah. “We are grateful for the pediatricians, caregivers, hospitals and other organizations who have dedicated themselves to caring for children for many years.  We are privileged to join with them in helping to advance healthcare for the children we serve.”

“This is the first step toward our partnership with our community to bring this long-needed, stand-alone children’s hospital to Las Vegas,” Cloward said. 

Design of the hospital has begun as well as clinical activities and workforce planning, including sustainable recruitment. More details will be available at a later date as the project develops.

This effort will only be accomplished through building a broad coalition of philanthropic, clinical, and community partners committed to exceptional care for children. In addition to the design planning, Intermountain Health Foundation will help bring to life our shared vision of the children’s hospital and services by building partnerships with community leaders, key supporters, and philanthropic donors.

“We recognize the vital role philanthropic donors play in creating a legacy of care that will impact kids now and for generations to come,” says David Flood, Intermountain Health chief development officer. “We invite our neighbors and community leaders to be part of something truly transformative that will not only expand access to healthcare but also strengthen the very fabric of our community.” 

Intermountain Health offers patient care at more than 65 clinics across southern Nevada. With its extended provider network, Intermountain Health delivers patient-centered primary, specialty, and urgent care services to approximately 350,000 southern Nevadans in Clark and Nye counties.   

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Intermountain Primary Children’s Hospital y el Departamento de Salud Pediátrica de la Universidad de Utah están mejorando y ampliando la secuenciación del genoma completo a más niños en toda la región montañosa occidental, gracias a una infusión de $9 millones al Centro de Medicina Personalizada de Intermountain Primary Children’s.

Esta infusión, que es la más grande en la historia del centro, se utilizará para crear “Primary Children’s Gene Kids”, una importante iniciativa genómica pediátrica de tres años de duración para ayudar a niños con condiciones médicas genéticas.

Primary Children’s Gene Kids busca ampliar el acceso a la secuenciación del genoma para bebés y niños de toda la región montañosa occidental. El resultado del genoma se devolvería rápidamente al niño y a su familia, y se convertiría en un recurso de por vida como el “genoma personal” del niño.

Gene Kids ayudará a pacientes jóvenes en cardiología, genética, enfermedades neuromusculares y neurología, así como a los bebés en la unidad de cuidados intensivos para recién nacidos del hospital. Los posibles participantes del programa serán identificados por sus proveedores.

Primary Children’s Gene Kids es posible gracias a una subvención de $4.5 millones de The Warren Alpert Foundation, que estuvo acompañada de generosas donaciones filantrópicas a la campaña Promesa Primary de Intermountain Health para crear el sistema de salud infantil modelo del país.

“Con la ayuda de Gene Kids, nos esforzaremos por llegar a todos los niños y las familias que lo necesiten, independientemente de su ubicación, a través de investigaciones, descubrimientos y terapias innovadoras que conduzcan a mejores resultados”, declaró Dustin Lipson, presidente de Intermountain Primary Children’s Hospital. “Agradecemos el apoyo de The Warren Alpert Foundation y de otros miembros generosos de la comunidad que nos ayudan a llevar al centro de medicina personalizada al siguiente nivel, sembrar esperanza y hacer avanzar la ciencia para ayudar a los niños en los próximos años”.

The Warren Alpert Foundation se centra en mejorar la salud del público a través de subvenciones y actividades programáticas que avanzan hacia la consecución o el perfeccionamiento de tratamientos médicos o curas a través de la investigación básica, la investigación traslacional y de resultados, y la educación para la salud. 

Se han descubierto más de 7000 enfermedades genéticas. Sin embargo, solo se ha encontrado cura para unas pocas, y muchos niños con enfermedades genéticas debilitantes y a veces mortales no reciben un diagnóstico debido a la evolución del campo y a los desafíos para acceder a las pruebas y a la experiencia pediátrica especializada.

 Primary Children’s Gene Kids aspira a cambiar eso mediante las siguientes acciones:

•  Proporcionar secuenciación del genoma completo a todos los niños que se sospeche que tengan algún trastorno genético. Esto incluye niños de todas las comunidades, independientemente de su raza, etnia, ubicación o necesidad financiera.
• Llegar a más niños y mejorar su atención médica con la ayuda de herramientas computacionales innovadoras, incluidas las herramientas de información genómica y la inteligencia artificial del departamento de salud de la Universidad de Utah.
• Proporcionar a todos los niños secuenciados y a sus familias su “genoma personal”, para que esté disponible y puedan utilizarlo con fines médicos toda la vida.

Gene Kids también establecerá protocolos centrales de investigación, intercambio y almacenamiento de datos, y contratará personal experto para ampliar el alcance de las pruebas genómicas en clínicas rurales y áreas desatendidas. 

“Esperamos que Gene Kids ayude a reducir la duración de la odisea que los niños y sus familias deben atravesar para conseguir un diagnóstico”, comentó Joshua Bonkowsky, médico y doctor del departamento de salud de la Universidad de Utah y director médico del Centro de Medicina Personalizada de Intermountain Primary Children’s Hospital. “Cuando no sea posible brindar un diagnóstico inmediato, los datos del niño se volverán a analizar después de un tiempo con la esperanza de diagnosticarlo en el futuro”.

Ese tipo de repetición del análisis fue lo que cambió la vida de Scarlet Hill, de 7 años de edad.

Scarlet nació con un trastorno genético desconocido que causa convulsiones y retrasos en el desarrollo. La secuenciación del genoma completo, llevada a cabo en el Intermountain Primary Children’s Hospital cuando era una bebé, no le proporcionó ningún diagnóstico. Sin embargo, le dio a su equipo de atención médica una guía para minimizar las convulsiones y ayudar a Scarlet a caminar, hablar, andar en bicicleta y desarrollar el amor por ir a la escuela.

Este año, el doctor Bonkowsky recomendó que Scarlet se hiciera las pruebas genéticas nuevamente.

Los resultados le dieron el tan esperado diagnóstico: Tubulinopatía del gen TUBB2B, un grupo de condiciones médicas causadas por variantes en seis genes de la tubulina que afectan al desarrollo y la función del cerebro.

“Ahora tenemos más respuestas y una pequeña comunidad de niños con el mismo diagnóstico para brindar apoyo y una mejor comprensión de lo que se puede esperar”, afirmó Cassandra Hill, madre de Scarlet.

“Ha sido maravilloso”.

La familia de Scarlet, que vive en Eden, Utah, se ha conectado con cientos de otras familias con niños como ella alrededor de todo el mundo para compartir experiencias y brindarse apoyo mutuo.

“Estamos aprendiendo mucho acerca de este gen”, expresó la madre. “Es genial poder ver a algunos de los otros niños y sus similitudes y diferencias con Scarlet”.

El Centro de Medicina Personalizada de Primary Children’s es una asociación abierta y colaborativa entre el Primary Children’s Hospital y el departamento de salud de la Universidad de Utah. Lanzado en el año 2019 con la financiación de Intermountain Foundation, el Centro de Medicina Personalizada lidera los esfuerzos por transformar la medicina pediátrica mediante el avance de las pruebas genéticas y el desarrollo de nuevas terapias genéticas. 

El Centro de Medicina Personalizada es parte de la Promesa Primaryde Intermountain Health, la histórica campaña de Intermountain para construir el sistema de salud infantil modelo del país. Esta oportunidad única en la vida de invertir en el futuro la salud de nuestros niños ha superado la meta mínima de $600 millones en una poderosa asociación entre miembros filantrópicos de la comunidad e Intermountain Health.  Los esfuerzos filantrópicos de la Promesa Primary continúan impulsando investigaciones muy necesarias para ayudar a que los niños sobrevivan y prosperen.

Primary Children’s Gene Kids es una de las varias iniciativas innovadoras adoptadas recientemente por el Centro de Medicina Personalizada.

Intermountain Children’s Health se ha asociado recientemente con Broad Clinical Labs y Fabric Genomics, líderes en la interpretación de secuenciación de próxima generación impulsada por la inteligencia artificial, para ayudar a acelerar el diagnóstico de niños con enfermedades genéticas, comenzando en Intermountain Primary Children’s Hospital. 

Esta asociación proporciona un servicio genómico de “muestras para reportar”, una identificación de bajo costo, rápida y más precisa de los trastornos genéticos en solo unos días, en lugar de semanas o meses. También le permite a los cuidadores crear planes de tratamiento que se ajusten a la composición genética única de cada niño.

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NOTA PARA LOS MEDIOS: Imágenes y videos disponibles a pedido.

Intermountain Primary Children’s Hospital and the University of Utah Health Department of Pediatrics are upgrading and expanding whole genome sequencing to more kids throughout the Intermountain West, thanks to a $9 million infusion to the Intermountain Primary Children’s Center for Personalized Medicine.

The infusion, the largest in the center’s history, will be used to create “Primary Children’s Gene Kids,” a three-year, major pediatric genomics initiative to help children with genetic conditions.

Primary Children’s Gene Kids aims to broaden access to genome sequencing for children and infants across the Intermountain West. The genome result would be returned rapidly to the child and their family, and become a life-long resource as their “personal genome.”

Gene Kids will help young patients in cardiology, genetics, neuromuscular diseases, and neurology, as well as infants in the hospital’s newborn intensive care unit. Potential program participants will be identified by their providers.

Primary Children’s Gene Kids is made possible by a $4.5 million grant from The Warren Alpert Foundation, which was matched by generous philanthropic donations to Intermountain Health’s Primary Promise campaign to create the nation’s model health system for children.

“With Gene Kids, we will strive to reach every child and family in need, regardless of their location, through research, discovery, and innovative therapies that lead to better outcomes,” said Dustin Lipson, president of Intermountain Primary Children’s Hospital. “We are grateful for the support from The Warren Alpert Foundation and other generous community members who are helping us take Personalized Medicine to the next level, inspire hope, and advance science to help children in the years to come.”

The Warren Alpert Foundation focuses on improving the health of the public through grants and programmatic activities that progress toward attaining or perfecting medical treatments or cures through basic research, translational and outcomes research, and health education. 

More than 7,000 genetic diseases have been discovered. However, cures have been created for a few, and many children with debilitating and sometimes fatal genetic diseases do not have a diagnosis due to the evolving field and challenges in accessing testing and specialized pediatric expertise.

Primary Children’s Gene Kids aspires to change that by:

• Providing whole genome sequencing to all children who have a suspected genetic disorder. This includes children in all communities, regardless of race, ethnicity, location, or financial need.
• Reaching more children and enhancing their care by using innovative computational tools, including University of Utah Health genomic data tools and AI.
• Providing every sequenced child and their family with their “personal genome,” available for life-long healthcare use.

Gene Kids will also establish central research protocols, data sharing, and storage, and hire expert staff to broaden the reach of genomic testing in rural clinics and underserved areas. 

“We hope that Gene Kids will help reduce the length of the diagnostic odyssey for children and their families,” said Joshua Bonkowsky, MD, PhD, University of Utah Health and medical director of the Center for Personalized Medicine at Intermountain Primary Children’s Hospital. “In times when an immediate diagnosis isn’t possible, a child’s data will be reanalyzed later in hopes of providing a diagnosis in the future.”

That kind of reanalysis was life-changing for 7-year-old Scarlet Hill.

Scarlet was born with an unknown genetic disorder that causes developmental delays and seizures. Whole genome sequencing, conducted at Intermountain Primary Children’s Hospital when she was an infant, didn’t yield a diagnosis. But it gave her care team a roadmap to minimize seizures, and helped Scarlet learn to walk and talk, ride a bike – and develop a love for going to school.

Earlier this year, Dr. Bonkowsky recommended Scarlet try genetic testing again.

The results yielded a long-awaited diagnosis: Gene TUBB2B Tublinopathies, a group of conditions caused by variants in six tubulin genes that affect brain development and function.

“We have more answers now and a small community of kids with the same diagnosis to have support and greater understanding of things to expect,” said Scarlet’s mom, Cassandra Hill.

“It has been awesome.”

Scarlet’s family, who lives in Eden, Utah, has connected with a couple hundred other families with kids like Scarlet around the world, to share experiences and support one another.

“We are learning so much about the gene,” the mother said. “It’s so cool to see, some of the other kids and their similarities to Scarlet – and also differences.”

Primary Children’s Center for Personalized Medicine is an open, collaborative partnership between Primary Children’s Hospital and University of Utah Health. Launched in 2019 with funding from Intermountain Foundation, the Center for Personalized Medicine leads efforts to transform pediatric medicine by advancing genetic testing and developing new gene therapies. 

 The Center for Personalized Medicine is part of Intermountain Health’s Primary Promise, Intermountain’s historic campaign to build the nation’s model health system for children. This once-in-a-lifetime opportunity to invest in the future of our children’s health has surpassed the minimum goal of $600 million in a powerful partnership between philanthropic members of the community and Intermountain Health.  Primary Promise philanthropic efforts continue to fuel critically needed research to help children survive and thrive.

Primary Children’s Gene Kids is one of several innovative initiatives recently adopted by the Center for Personalized Medicine.

Intermountain Children’s Health recently partnered with Broad Clinical Labs and Fabric Genomics, a leader in AI-powered, next-generation sequencing interpretation, to help speed diagnosis of infants with genetic diseases, starting at Intermountain Primary Children’s Hospital. 

The partnership provides a “sample-to-report” genome service, a low-cost, fast, and more precise identification of genetic disorders within days, rather than weeks or months. It also allows caregivers to create treatment plans tailored to the unique genetic makeup of each infant.

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NOTE TO MEDIA: Images and video available upon request.

¿No hay nieve para dar un paseo en trineo? Ningún problema.

Santa Claus le pidió un aventón a la ambulancia aérea “Life Flight” de Intermountain y se dirigió al Intermountain Primary Children’s Hospital, donde aterrizó en el techo para repartir un saco de adornos navideños con un mensaje enérgico: necesita voluntarios que le ayuden en el evento “Festival of Trees” de este año, evento que beneficia a jóvenes pacientes con necesidades. 

El evento anual Festival of Trees es una tradición navideña y muy apreciada de Utah, impulsada por cientos de voluntarios de este estado y de estados aledaños que donan miles de horas a fin de crear una gran cantidad de árboles, guirnaldas, figuras de pesebres, casitas de jengibre , edredones y demás artículos con el objetivo de recaudar fondos.

El año pasado, el evento recaudó $3.4 millones de dólares para ayudar a los pacientes necesitados del Intermountain Primary Children’s Hospital, y para cumplir con la promesa principal de Intermountain Health de crear el sistema de salud nacional modelo para niños. 

Si bien el evento “Festival of Trees” tiene lugar en diciembre, el diseño de los árboles, las guirnaldas, las casitas de jengibre y demás artículos donados comienza ahora.

“Queremos darles las gracias a todos los voluntarios talentosos que hacen que el Festival sea posible”, dijo Dana Hussey, copresidenta de “Festival of Trees” y uno de los asistentes de Santa. “Es un verdadero acto de amor de la comunidad. No es necesario ser un decorador profesional para colaborar, divertirse y marcar una diferencia en las vidas de estos niños”. 

Si desea obtener información sobre los diseñadores del evento “Festival of Trees”, y para registrarse como voluntario, visite FestivalofTreesUtah.org.

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No snow for a sleigh? No problem.

Santa Claus hitched a ride on Intermountain Life Flight to land on the rooftop of Intermountain Primary Children’s Hospital and deliver a sack of Christmas decorations with one vital message: He needs volunteers to help with this year’s Festival of Trees to benefit young patients in need. 

The annual Festival of Trees is a beloved Utah holiday tradition powered by hundreds of volunteers from Utah and neighboring states, who donate thousands of hours to create hundreds of trees, wreaths, nativities, gingerbread houses, quilts, and other items for the fundraiser.

Last year, the event raised $3.4 million dollars to help patients in need at Intermountain Primary Children’s Hospital, and to deliver on Intermountain Health’s Primary Promise to create the nation’s model health system for children. 

Festival of Trees takes place in December, but designing the trees, wreaths, gingerbread houses, and other donated items begins now.

“We’re thankful for all of the talented volunteers who make the Festival possible,” said Dana Hussey, Festival of Trees co-chair and one of Santa’s greeters. “It really is a labor of love from the community. You don’t have to be a professional decorator to volunteer, have fun, and make a difference in the lives of these kids!” 

For information about Festival of Trees designers, and to apply to volunteer, visit FestivalofTreesUtah.org.

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Debido al calor del verano, los expertos en seguridad de Intermountain Primary Children’s Hospital instan a los conductores a que nunca dejen a los niños en un vehículo, ni siquiera por un minuto, y ofrecen herramientas gratuitas para ayudar a los conductores a evitar lesiones o incluso la muerte por sobrecalentamiento en automóviles con temperatura elevada.

“Queremos que todos ‘Paren, Miren y Cierren’ antes de salir del vehículo para prevenir lesiones accidentales o la muerte de un niño”, manifestó Michelle Jamison, gerente del programa de salud comunitaria infantil del Intermountain Primary Children’s Hospital. “El interior de su vehículo puede calentarse muy rápidamente. En apenas 10 minutos, la temperatura dentro de un automóvil puede aumentar 20 grados y volverse letal. Es crucial que los conductores estén atentos y usen herramientas visuales este verano para evitar cualquier tragedia”. 

Además, Intermountain Children’s Health está ofreciendo calcomanías gratuitas “Forget Me Not” (No te olvides de mí) para las ventanas, que ayudan a los conductores a recordar la presencia de un niño en el auto. También se ofrecerá una herramienta de escape para vehículos en eventos de seguridad infantil seleccionados este verano, hasta agotar existencias. 

Cada año, mueren casi 40 niños en el país porque los dejaron en un vehículo a temperaturas elevadas. En Utah, murieron 13 niños por quedarse encerrados en vehículos a temperaturas elevadas entre 1998 y 2022, otros fueron salvados a tiempo, pero sufrieron golpes de calor y lesiones.

Las tragedias en vehículos a temperaturas elevadas pueden ocurrirle a cualquiera. A menudo suceden cuando un cuidador olvida que un niño está en el auto, ya sea por agotamiento o cambios en la rutina, factores habituales que las familias viven durante las vacaciones de verano y los viajes. Esto puede hacer que el cerebro de una persona funcione “en piloto automático”, lo que favorece la posibilidad de que se olvide del niño. 

La temperatura corporal de un niño puede aumentar entre tres y cinco veces más rápido que la temperatura corporal de los adultos. Romper una ventana casi no modifica la temperatura interior del automóvil. 

“Los niños elevan su temperatura mucho más rápido que los adultos”, explicó Wyatt Argyle, gerente del programa de traumatología de Miller Family Campus. “El golpe de calor empieza cuando la temperatura corporal central de los niños alcanza unos 104 °F (40 °C). Por eso es vital nunca dejar a un niño en un auto, aunque sea por solo un minuto o dos”. 

Además, 1 de cada 4 muertes en autos con temperatura elevada ocurre cuando un niño sin supervisión accede al vehículo, según la Administración Nacional de Seguridad del Tráfico en las Carreteras. 

“Si alguna vez desaparece un niño, compruebe primero todos los vehículos y lugares con agua cercanos,” recomendó el sargento Kristopher Cope de la Patrulla de Carreteras de Utah. “Si ve a un niño en un vehículo, llame al 911. Si lo ve sufrir por el calor, sáquelo del vehículo y refrésquelo lo más rápido posible”.  

Estas son algunas formas de prevenir lesiones por calor en autos, según el Intermountain Primary Children’s Hospital y la Administración Nacional de Seguridad del Tráfico en las Carreteras:

• “Parar. Miren y Cerrar” al momento de estacionar un vehículo. 

• Hay calcomanías Forget-Me-Not/Spot disponibles en Intermountain Primary Children’s Hospital a pedido hasta agotar existencias, enviando un correo electrónico a PCHHOTDL@imail.org con su nombre, dirección postal y la cantidad deseada (máximo 10 por persona). 

Estas calcomanías de doble cara se colocan en la ventana de la puerta del conductor para que sean visibles. Recordarán a los conductores divisar al niño (“Spot the Tot”) con solo caminar alrededor del vehículo y buscarlos antes de hacer marcha atrás. En el interior del vehículo, la etiqueta dice “Forget Me Not” (No te olvides de mí), que le recuerda verificar los asientos traseros antes de salir del auto. 

• Las herramientas de escape para vehículos Resqme estarán disponibles en varios eventos comunitarios de seguridad. La herramienta viene con un llavero y un clip para visera, que se pueden quitar rápidamente y usar para romper una ventana o cortar un cinturón de seguridad para liberar a un niño.

Estos son algunos consejos adicionales de expertos para prevenir lesiones por calor en autos: 

• Nunca deje al niño solo en el vehículo, ni siquiera por unos minutos. No hay garantía de que regresará rápidamente.
• Hágase el hábito de mirar siempre los asientos traseros antes de salir de su vehículo.
• Mantenga los vehículos cerrados y las llaves fuera del alcance de los niños.  Los niños curiosos pueden entrar en vehículos abiertos y luego suelen no poder salir por sus propios medios.
• Asegúrese de tener a la vista un objeto que le recuerde que hay un niño con usted, como un peluche o un bolso de pañales en el asiento del copiloto. 
• Coloque algo que necesitará al llegar a su destino, como un teléfono, un bolso o su celular en el asiento trasero. De esa manera, cuando lo busque, verá al niño. 

Para obtener más información acerca del bienestar, la seguridad de los niños y la prevención de lesiones, visite primarychildrens.org/safety.

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Intermountain Children’s Health is accelerating expanded access to critically needed behavioral health services for adolescents with a new family-centered Intermountain Primary Children’s Hospital Behavioral Health Center in Taylorsville.

Intermountain Primary Children’s Hospital is pursuing construction of the new center earlier than anticipated thanks to a $25 million investment from the state of Utah and generous community support of Primary Promise, Intermountain’s historic campaign to build the nation’s model health system for children.  

The new Intermountain behavioral health center is under construction on the present campus Intermountain Primary Children's Wasatch Canyons Behavioral Health Campus in Taylorsville. It will be the first of its kind center to offer vital behavioral health services including a walk-in crisis center and Utah's first dedicated space for mental health crisis care for youth with autism and neuro-diverse needs.   

The new Intermountain center is expected to open in late 2025. It will ultimately replace current Wasatch Canyons infrastructure and expand present capabilities to serve more young children and teens.

The new center will be home to Intermountain’s pediatric behavioral health services and streamline coordination of current and new initiatives, projects, and collaborations to address pediatric mental and behavioral health throughout Intermountain's seven-state region. 

“We extend our gratitude to the state of Utah and the leadership of our elected officials for helping address the crisis in pediatric behavioral health,” said Rob Allen, president and CEO of Intermountain Health. “We also thank all Utahns who care deeply about doing the right thing for our children. Everyone in the state can feel ownership in this life-changing investment in the health and well-being of our youth with these vital services.”  

The new, $96 million Intermountain Primary Children’s Hospital Behavioral Health Center will continue to provide existing mental health services in a world-class, 90,000-square-foot facility, and expand programming to include a nearly 50 percent increase in inpatient beds.  

The center will feature a walk-in-crisis center, the state’s first dedicated behavioral health inpatient unit to provide mental health crisis care tailored for youth with autism and neuro-diverse needs, family-centered behavioral healthcare, where family members will be actively engaged in their child’s care and be able to stay overnight, and outpatient spaces designed for more intensive outpatient treatment, day treatment, and group therapy programs 

Expanding access to pediatric behavioral health services is part of Intermountain Health’s Primary Promise to build the nation’s model health system for children. This once-in-a-lifetime opportunity to invest in the future of our children’s health has attracted $600 million in a powerful partnership between philanthropic members of the community and Intermountain Health.  

“Today is all about keeping our Primary Promise,” said Katy Welkie, chief executive officer of Intermountain Primary Children’s Hospital and vice president of Intermountain Children’s Health. “With the state of Utah’s $25 million funding, and Intermountain Health’s financial match, we’re fortunate to be able to pursue these critical behavioral health services for youth in our community right now without the costs translating to our patients. Every day we delay is a missed opportunity to help a child thrive. With stakes this high, we cannot hesitate.” 

Nationally, one in five children ages 3 to 17 faces either a mental, emotional, developmental, or behavioral disorder.  

The number of children and adolescents in Utah who report having poor mental health has more than doubled over the last decade. In fact, last year in Utah, 42.7% of youth who felt sad, hopeless, or suicidal did not talk to anyone about it. Suicide remains a leading cause of death for Utah youth. 

“Primary Promise will directly contribute to lifesaving and life-changing advancements for the betterment of children everywhere,” said Utah businesswoman, civic leader, and philanthropist, Gail Miller, who, along with her family, contributed $50 million dollars to Primary Promise in 2020, the largest single investment in the history of the Larry H. & Gail Miller Family Foundation.

Miller has served as Primary Promise’s executive cabinet co-chair since the campaign’s inception and is the namesake of the Intermountain Primary Children’s Hospital, Larry H. & Gail Miller Family Campus in Lehi. 

“I invite every member of the community to partner with us, so that working together, we can help even more children grow up stronger,” Miller said. 

One of those who has benefitted from these services is Liz, a young patient at Intermountain Primary Children’s Hospital.

Liz received the family-centered, behavioral health services she needed through Intermountain Primary Children’s Hospital when she was a young teen. Since then, she has graduated high school, and is looking forward to her future.  

“A lot of the therapy is teaching parents how to cope, because we need it. And having those tools was huge,” said Liz’s mom, Kyla. “The Primary Children’s behavioral health team was an absolute lifeline for us. They saved my kid. And that’s something I can never repay.”   

The current Intermountain Wasatch Canyons campus was constructed in the 1980s as a mixed-used facility. More recently, it was converted to an Intermountain Primary Children’s behavioral health campus, serving thousands of children and young adolescents in outpatient, inpatient, and day program behavioral health settings.  

But the need has outgrown the facility.  

Construction is underway on the new Intermountain Primary Children’s Behavioral Health Center, thanks to the $25 million state appropriation, supported by the Governor’s Office of Planning and Budget, and approved by the Utah Legislature.  

“This $25 million investment from the people of Utah represents the best of who we are, when government and community unite around shared purposes such as supporting the behavioral health of children,” said Rep. Steve Eliason, a member of the Utah House of Representatives. “With youth suicide being the number one cause of death for children in Utah, we should be laser focused on saving our children. This project is a critical step in that effort." 

The new Intermountain Primary Children’s Hospital Behavioral Health Center will also house the Stabilization and Mobile Response program team, which responds to homes in moments of need to help stabilize children in crisis (1-833-SAFE-FAM), as well as the Intermountain Primary Children’s statewide Assessment, Referral, Consultation Service (ARCS) free service line at 801-313-7711, which helps connect young children and teens to services close to their communities.  

ARCS and Stabilization and Mobile Response are available thanks to community partnerships, and are among several Intermountain Primary Children’s Hospital service expansions implemented over the past few years, including:  

• Expanded group therapy options and crisis partial hospitalization programs, available at Primary Children’s Summit Day Programs in Ogden, and Larry H. and Gail Miller Family Campus in Lehi, and coming soon to Intermountain St. George Regional Hospital. 

• An entire floor of Miller Family Campus dedicated to behavioral health services for children.  

“Behavioral health care takes all of us,” said Amanda Choudhary, senior director of pediatric behavioral health at Intermountain Primary Children’s Hospital. “We’re so excited about the new Behavioral Health Center, and what it will mean for patient care, and our ability to treat the entire family.”  

“Be a part of history — the most significant investment ever made for the health and wellness of children in the Intermountain West. Children today, and for generations to come, need your support. We invite everyone to contribute today to help children in our community at PrimaryPromise.org,” said Choudhary. 

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