Authors: Seattle Children's Press Team

A federal contract awarded to Seattle Children’s will establish a new center to study tuberculosis. Source: Getty Images.
Seattle Children’s Research Institute is one of three recipients of $30 million in first-year-funding provided by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health (NIH), to establish centers for immunology research to accelerate progress in tuberculosis (TB) vaccine development.
The awards provide up to seven years of support for three Immune Mechanisms of Protection Against Mycobacterium tuberculosis (IMPAc-TB) Centers to uncover the immune responses needed to protect against TB infection. In addition to Seattle Children’s, other IMPAc-TB centers will be led by the Infectious Disease Research Institute, also in Seattle, and the Harvard T.H. Chan School of Public Health.
On the Pulse learned more about the significant research that will be funded by this award which has the potential to provide up to $83 million to the Cascade IMPAc-TB Center, led by Dr. Kevin Urdahl, a TB researcher in Seattle Children’s Center for Global Infectious Disease Research. Read full post »
Authors: Seattle Children's Press Team

The parasite that causes malaria waits in the salivary glands of the mosquito until it has the opportunity to move to a human host. New research exploring this stage of the parasite offers findings that could help identify new strategies to protect against malaria. Photo: Getty Images.
Within seconds after an infected mosquito bites, the malaria parasite navigates the host skin and blood vessels to invade the liver, where it will stay embedded until thousands of infected cells burst into the bloodstream, launching malaria’s deadly blood-stage infection.
Now, for the first time, a team from Seattle Children’s Research Institute describes how malaria Plasmodium parasites prepare for this journey as they lie in waiting in the mosquito’s salivary glands. Researchers say this knowledge may help identify new strategies to block transmission of the parasite – a critically important step needed for the eradication of malaria, a disease that continues to sicken over 300 million people and kill an estimated 435,000 people worldwide every year. Read full post »
Authors: Lyra Fontaine

Isabelle Zoerb, 13, has a rare genetic disorder called primary ciliary dyskinesia (PCD).
Like a typical 13-year-old, Isabelle Zoerb plays volleyball and tap dances. She also regularly uses an inhaler, takes antibiotics to minimize lung inflammation and wears a therapy vest that vibrates to help clear her lungs. A device in her chest provides intravenous medication when needed.
This is because Isabelle has primary ciliary dyskinesia (PCD), a rare genetic condition. Cilia are tiny hair-like cells in airways that beat in a coordinated way that clear out germs, mucous and particulates like dust from the respiratory tract. In people with PCD, cilia do not beat properly, which prevents bacteria from clearing the lungs, sinuses, nose and ears.
When Caroline Zoerb adopted Isabelle from China as a toddler, Isabelle’s organs were reversed like a mirror image. She had been born with a hole in her heart and was constantly sick. Seeking answers, the family met Dr. Margaret Rosenfeld, an attending physician and researcher at Seattle Children’s, who thought she might have PCD based on her symptoms.
Seattle Children’s is the only PCD referral center in the Pacific Northwest, with patients coming from Wyoming, Idaho, Oregon, Alaska and Montana. Providers see patients for regular follow-ups to make sure their needs are being met and they are responding to their therapies.
“We always seem to make our way to Seattle Children’s because they have the expertise to help someone with such a rare disease,” Zoerb said. Read full post »
Authors: Anna Altavas
Seattle Children’s will embark on a groundbreaking clinical trial that will potentially transform treatment methods for children with relapsed acute pediatric leukemia.
In collaboration with The Leukemia & Lymphoma Society (LLS), Dr. Todd Cooper, an oncologist and director of the Seattle Children’s High-Risk Leukemia Program, is part of a team leading the effort to launch a global precision medicine master clinical trial called the LLS Pediatric Acute Leukemia (PedAL) Initiative. The goal of the trial, which is part of The LLS Children’s Initiative: Cures and Care for Children, is to test multiple targeted therapies simultaneously at up to 200 clinical sites, including Seattle Children’s, worldwide.
Cooper, the Clinical Trial Lead, will oversee the master screening trial where children with newly diagnosed and relapsed acute leukemia can choose to have their clinical and biologic information included in an international database. This database will serve many purposes, including helping to determine an individual child’s eligibility for a number of targeted clinical trials. The data will also be used to uncover new targets for therapy and as a rich source for groundbreaking discoveries.
On the Pulse sat down with Cooper to discuss the specifics of the trial and how it will possibly revolutionize the types of cancer treatments available for children.
Read full post »
Authors: Lindsay Kurs

Daniel Sokoloff and his mom, Lara Sokoloff, photographed here when Daniel was younger, were one of 100 families who contributed to a study aimed at understanding common birth defects of the brain.
In the largest genetic study of the most common birth defects of the brain diagnosed during pregnancy, researchers from Seattle Children’s Research Institute say their findings evolve our understanding of brain development. The findings will also change the information given to expecting parents when cerebellar malformations, such as Dandy-Walker malformation and cerebellar hypoplasia, are detected prenatally.
With funding support from the Dandy-Walker Alliance and the Philly Baer Foundation, the results gathered from 100 families provide the most accurate information to date about the genetic and non-genetic causes of birth defects involving the cerebellum. They will also help doctors counsel parents about their child’s prognosis after they’re born and their risk of having another child with the abnormality.
“For those who are pregnant, you certainly don’t want to have a problem with the baby, but if doctors detect a brain abnormality, you want accurate information about what that means,” said Dr. William Dobyns, the senior author on the paper published in the American Journal of Human Genetics and an investigator in the Center for Integrative Brain Research. “It’s the same after birth. If you have a child at risk for developmental challenges, it helps to know the cause and what’s going to happen. This study significantly advances our ability to answer those questions.” Read full post »
Authors: Lyra Fontaine

Credit: E. Dubois Photography
Tatum Fettig remembers when her family’s lives changed forever. In 2016, her daughter Teagan began vomiting and struggling with balance. At Seattle Children’s, Teagan, then 2, was diagnosed with a pediatric brain tumor, medulloblastoma. Through the grueling process of chemotherapy treatment and radiation, Fettig and her husband were by Teagan’s side, trying to cope with the uncertainty of whether they would see their youngest child grow up. They mourned the loss of their former life.
“Having a child with cancer is traumatizing,” Fettig said. “It doesn’t mean you’re broken, but it affects the whole family. People tell parents to take care of themselves, but when your kid is sick, you can’t think of anything else.”
Fettig’s experience is not uncommon. Research shows that parents of children with cancer experience psychological stress during the child’s treatment. After treatment is complete, parents report higher anxiety, depression and posttraumatic stress than the average population. However, formal mental, emotional and social support for parents is not typical after a child’s cancer diagnosis.
In a study published in JAMA Network Open, Seattle Children’s researchers addressed this need, adapting an intervention previously used for teens and young adults with cancer. They found that one-on-one sessions teaching skills through a tool called Promoting Resilience in Stress Management for Parents (PRISM-P) improved resilience and benefit finding, or personal growth, among parents of children with cancer. Read full post »
Authors: Rose Ibarra (Egge)

Marilee Killpack describes the birth of her fourth son, Abram, as “magical.”
After a typical, full-term pregnancy, Abram was born in Provo, Utah, weighing 9 pounds. He seemed to be healthy and strong, with one exception: He had petechiae all over his body — red dots that appear on the skin when tiny blood vessels break.
Providers suspected the marks were bruises from his quick birth, but blood tests revealed his platelets were extremely low and his immune system was not making enough antibodies to fight infections.
Abram was taken to the neonatal intensive care unit at his local hospital for platelet and immunoglobulin infusions. Still, his blood counts continued to drop. The family was transferred to a nearby children’s hospital where providers determined he had mononucleosis, which they suspected was causing his immune deficiency.
“They said he would be fine in a few months and sent us home,” Killpack remembers.
But Abram was not fine. He developed severe, uncontrollable eczema when he was 3 weeks old.
“His body was shredded,” Killpack said. “We tried everything — lotions, oils, anything we could think of — but nothing worked. He was screaming; he was in so much pain.”
When providers saw Abram’s skin, they immediately sent a sample of his blood for genetic testing. They suspected he might have a rare, life-threatening disorder called Wiskott-Aldrich syndrome (WAS). Read full post »
Authors: Carolina Sommer

The author with her daughter, Mariana, 7. Mariana has a rare disease called Pfeiffer Syndrome.
Often in life we have a vision of what we want or imagine our lives to be like, but along that journey, life presents obstacles and opportunities for us. It shapes us and makes us who we are.
My own journey started with its own twists and turns. I was born in Medellin, Colombia and moved to Seattle with my mom at the age of 7. Two months later I got sick. I couldn’t stop throwing up and had a hard time waking up. A year after being hospitalized on and off at Seattle Children’s, I was diagnosed with a cavernous malformation and had brain surgery two months later. My chances of surviving the surgery were small. In Colombia I would have died, but Seattle Children’s saved my life.
When I gave birth to my daughter, Mariana, 27 years later, I never imagined that she too would face a serious medical condition. Much of my life was impacted by my medical condition, but it was nothing compared to what our family would experience as we learned Mariana had an incurable rare disease. It was the beginning of a life-changing journey for our family. Read full post »
Authors: Seattle Children's Press Team
Summer school is in session for researchers at Seattle Children’s Research Institute, and although there are text books and a final exam, very little else about the biology course taught by Dr. Philip Morgan and his fellow scientist and wife, Dr. Margaret Sedensky, is business as usual. That’s because their students are Tibetan monks and their classroom is at a monastic university in southern India. Read full post »
Authors: Jennifer Carson and Lindsay Kurs

Dr. Andy Shih is studying how tiny strokes called microinfarcts develop and impact the developing brain.
Strokes come in many shapes and sizes. In children and adults, strokes often present sudden limb or facial numbness, confusion and dizziness.
But some strokes that cause clots to develop in the small blood vessels of the brain don’t exhibit any symptoms at all. Studies have shown that hundreds to thousands of these small, asymptomatic strokes, known as microinfarcts, likely occur over the course of decades in adult brains and may contribute to cognitive decline as we age. Even less is known about the occurrence and consequences of microinfarcts in young, developing brains.
Enter Dr. Andy Shih, principal investigator at Seattle Children’s Research Institute’s Center for Developmental Biology and Regenerative Medicine. Shih hopes to solve the mystery of microinfarcts by using advanced optical imaging — modeling them in the lab and visualizing their effects in real-time. On the Pulse sat down with Shih to learn more about his work and how he’s applying his discoveries from studying dementia in aging brains to understanding how blood vessels and clots first emerge in the brain. Read full post »