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Jakob’s Journey at Renown Children’s Hospital
In August 2016, six-year-old Jakob was admitted to Renown Children's Hospital with what seemed like a common ear infection. Jakob's condition quickly progressed, and he started experiencing neurological symptoms such as difficulty speaking and a full-body shutdown. Doctors, neurologists and specialists from Renown worked with doctors from Stanford, where he was ultimately diagnosed with Bickerstaff brainstem encephalitis (BBE). BBE is a rare, autoimmune response that attacks the nerves in the body due to an acute illness such as a cold, flu or, in Jakob's case, an ear infection. Jakob could not breathe or eat and experienced paralysis on the side of his face, throat, stomach, bowels, lungs and legs. In addition, he started to rapidly lose weight as well as body function. Jakob lost half his body weight which resulted in the need for a Gastrostomy tube. This device is placed surgically and gives direct access to the stomach to give the child the nutrition needed. He also needed occupational therapy, and after three and a half months of ICU respiratory therapy, surgeries and treatments, he was released home to regain his strength. Forever Grateful Anica, Jakob's mom, said, "If it were not for the quick response and unconditional support and compassion from the team at Renown, Jakob would not be here today." Jakob's family is forever grateful to the staff, community and expertise at Renown for their unwavering commitment to their son and family during their most trying time in life. "When I met Jakob on the first day of his illness, so much was unknown. My team and I were worried, as his symptoms were very unusual. His rapid deterioration, after being a perfectly healthy child, was clearly terrifying for his parents. Handing over a child's care to a team of strangers is one of the scariest things that can happen to parents,” said Dr. Kris Deeter, Physician in Chief at Renown Children’s Hospital. “However, Anica and Jeremiah were also very clear that they did not want Jakob transferred somewhere else. So, we used all our resources to care for him, arrive at a diagnosis, and start aggressive therapies. They listened to every word we said, educated themselves, and became partners in Jakob's care. We all became part of Team Jakob, and soon, he proved to us just how strong he was." Today, Jakob is 13 years old and thriving in every aspect of his life. He is currently on the honor roll in school and finds joy in his newfound passion for the violin. He loves spending his free time learning about mixing music, making new friends and traveling to different parts of the country. This summer, he will travel to Europe to explore his passion for culture. The family says, "We owe it all to the family and staff at Renown."
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Freenome Adds Renown Health As Partner for The Sanderson Study
Freenome, a privately held biotech company announced today that Renown Health has joined as a partner for the Sanderson Study, Freenome’s study of its multiomics platform, in combination with real-world data to detect multiple cancers. The study encompasses both traditional and real-world data to generate evidence of clinical validation for certain high- and elevated-risk populations while also refining the platform’s cancer classification and risk prediction models. In addition, the Sanderson Study will build the necessary infrastructure to bridge the gap between clinical research and day-to-day clinical impact. Freenome uses a multiomics platform that combines tumor and non-tumor signals with machine learning to detect cancer in its earliest stages using a standard blood draw. “We are delighted to partner with Freenome to launch this far-reaching trial which has transformative potential,” said Lee Schwartzberg, MD, medical oncology section chief and the principal investigator for the Sanderson Study at Renown. “Studying the impact of merging real-world information from patients with multiomics technology holds the promise of a truly personalized approach to early detection of cancer.” Renown Health has multiple clinical trials currently available to patients in northern Nevada across a variety of specialties, including oncology, cardiology, neurology, pediatrics, and pulmonology. Cancer is the second-leading cause of death in the Silver State, claiming the lives of more than 5,400 Nevadans each year. This number has increased since the last five-year plan estimates of 4,400 deaths per year.1 Promoting research to improve cancer prevention, detection, diagnosis and treatment is a key goal outlined in the Nevada Cancer Plan, 2021-2025, a framework developed by the Nevada Cancer Coalition in partnership with the Nevada Department of Health and Human Services. Access and participation in clinical trials is a key component of the plan, which, Renown says, makes participation in the Sanderson Study even more significant. “At the inception of the William N. Pennington Cancer Institute, we committed to not only provide the very best care possible to our community, but to also help improve outcomes through participation in research,” said Max Coppes, MD, PhD, MBA, cancer center director of the William N. Pennington Cancer Institute. “The research collaboration with Freenome has the potential to make a dream come true: Finding cancer early when it’s most treatable.” The Sanderson Study will enroll approximately 8,000 patients through Freenome’s clinical study partner network and numerous regional health systems across the United States. “Renown is committed to making a difference in the health and well-being of patients in communities across the state of Nevada, and that includes access to innovative research,” said Lance Baldo, MD, chief medical officer at Freenome. “The combination of real-world data and multiomics is poised to transform the landscape of early cancer detection.” Freenome’s clinical studies are named for employees’ loved ones who fought cancer. This study honors Tim Sanderson, the loving father of a Freenome engineer. For residents of Nevada interested in participating in the Sanderson Study, contact the William N. Pennington Cancer Institute clinical research coordinators at renown-crd@renown.org. Click here for more information on the Sanderson Study. About Freenome Freenome is a biotechnology company with a comprehensive multiomics platform for the early detection of cancer using a standard blood draw. The company combines its deep expertise in molecular biology with advanced computational biology and machine learning to detect disease-associated patterns among billions of circulating cell-free biomarkers. Freenome is headquartered in South San Francisco, California. About Renown Health’s William N. Pennington Cancer Institute The William N. Pennington Cancer Research Institute provides comprehensive multidisciplinary cancer care for the northern Nevada community, helps educate the next generation of healthcare providers, and works to improve treatments and outcomes through active participation in research. About Renown Health Renown Health is the region’s largest, locally governed, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California. With a diverse workforce of more than 7,000 employees, Renown has fostered a longstanding culture of excellence, determination and innovation. The organization comprises a trauma center, two acute care hospitals, a children’s hospital, a rehabilitation hospital, a medical group and urgent care network, and the region’s largest, locally owned not-for-profit insurance company, Hometown Health.
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Renown Children's Hospital Announces 2023 Children's Miracle Network Champion Child
Renown Children’s Hospital and Children’s Miracle Network Hospitals (CMNH) are excited to announce Shaylie Edwards as the 2023 Champion Child. A fighter from a young age, seven-year-old Shaylie has overcome many challenges in her short life. In 2019 when she was three, Shaylie was hit by a car while using a crosswalk with her father. She was admitted to the Wilbur D. May Pediatric Intensive Care Unit (PICU) at Renown Children’s Hospital and stayed there for three months. A video introducing Shaylie and her journey can be found here. Shaylie’s mom, Erica Edwards reports that as a result of the accident, Shaylie has been treated by Renown Children’s Hospital physicians, nurses and team for a broken neck in two places, a broken jaw in two places, a fractured sacrum, a broken femur and three small brain bleeds. She has been in outpatient therapy for the last three years and continues making strides daily. “Shaylie’s perseverance, dedication and joy inspires all of us at Renown Children’s Hospital,” said Kristina Deeter, MD, MBA, FAAP Physician-in-Chief, Renown Children’s Hospital and Chair of Pediatrics, University of Nevada, Reno School of Medicine,” (pictured right with Shaylie). “It has been an incredible joy to witness her progress and to care for Shaylie and her family. We are thrilled she has been chosen to share her story with the world.” The New England Journal of Medicine cites preventable injuries as the number one leading cause of death among children. This includes motor vehicle accidents, firearm injuries, drowning, poisoning, burns and suffocation. According to Safe Kids Worldwide, an average of 155 children under the age of 10 die every year as a result of pedestrian injury, with 64% of those involving motor vehicles. Across the U.S., due to distracted driving, a pedestrian is killed every two hours and injured every seven minutes. Most drivers feel they can safely take their eyes off the road for 0-2 seconds, but a car can travel the length of a football field in 5 seconds at 55 MPH. Shaylie’s family and the team at Renown Children’s Hospital urge drivers to be fully aware and eliminate distractions while driving. “We were in the Wilbur D. May PICU for three months and the first five days were very iffy. We did not know if she would come out of her coma, but Shaylie is a fighter. The care team at Renown Children’s Hospital made me feel at home and like we were all going through this together,” said Shaylie’s mother, Erica Edwards. “Shaylie’s recovery was a collaboration between doctors, nurses, and our family. Together we were there to support Shaylie, who has proven to us repeatedly that she has a greater purpose in life.” “It was heartwarming to meet Shaylie and her family,” said Dr. Brian Erling, MBA, CEO of Renown Health. “Shaylie is truly a champion! She and her family have faced life's unanticipated events with strength and resilience. Despite the struggles, they have carried on with hope and determination. They find joy in life every day and inspire us all. We have much to learn from their example.” Through Renown Children’s Hospital, Shaylie and 100,000 area children now have access to more than 60 pediatricians, including those specializing in adolescent medicine; anesthesia; cardiology; craniofacial surgery; dentistry; ear, nose and throat conditions; emergency medicine; endocrinology; gastroenterology; general pediatrics; hospitalist medicine; intensive care; neonatology; neurology; oncology; ophthalmology; orthopedics; psychiatry; psychology; pulmonology; surgery; urology and other subspecialties previously lacking in the community, as well as a pediatric emergency room, pediatric ICU and contemporary healthcare services at Renown Children’s Hospital. Prior to 2016, about 30% of all pediatric patients had to leave northern Nevada to receive the specialty care they needed. Now, thanks to donor support, Renown estimates that 97% of all pediatric patients and their families can receive both general and specialty pediatric care locally. The next nearest children’s hospital in the state is 7 hours or 438 miles away in Las Vegas. Renown Children’s Hospital is proud to be the only CMNH hospital in northern Nevada, one of only 170 premier children’s hospitals in North America. Shaylie will serve as Renown Children’s Hospital’s CMNH Champion Child for the next year, shining as the face of the hospital in the community and sharing her inspiring story. Renown Health Foundation oversees the local CMNH programs and its fundraising. One hundred percent of all funds raised by CMNH partners stay local to support children and families in our community. Your generous support affords much-needed items to help our littlest patients cope with the potential stressors associated with hospitalization and illness. To donate, visit www.renown.org/donate. About Renown Health Renown Health is Nevada’s largest, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe, and northeast California. With a diverse workforce of more than 7,000 employees, Renown has fostered a longstanding culture of excellence, determination, and innovation. The organization comprises a trauma center, two acute care hospitals, a children’s hospital, a rehabilitation hospital, a medical group and urgent care network, and the locally owned not-for-profit insurance company, Hometown Health. Renown is hiring people like you. Visit us at www.renown.org/careers. About Children’s Miracle Network Hospitals Children’s Miracle Network Hospitals® raises funds and awareness for 170 member hospitals that provide 32 million treatments each year to kids across the U.S. and Canada. Donations stay local to fund critical treatments and healthcare services, pediatric medical equipment, and charitable care. Since 1983, Children’s Miracle Network Hospitals has raised more than $7 billion, most of it $1 at a time through the charity's Miracle Balloon icon. Its various fundraising partners and programs support the nonprofit's mission to save and improve the lives of as many children as possible. Find out why children's hospitals need community support, and learn about your member hospital, at www.renown.org/CMNH.
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