TAG: "Pediatrics"

UCSF receives $40M gift for new Medical Center at Mission Bay


Outpatient medical building to be named in honor of the Ron Conway family.

CSF Medical Center's new outpatient building, located on 16th Street, will be named the UCSF Ron Conway Family Gateway Medical Building in honor of the family $40 million gift. Some outpatient clinics will begin opening on Jan. 26. (Photo by Cindy Chew)

By Karin Rush-Monroe, UC San Francisco

UC San Francisco has received a $40 million gift from angel investor and philanthropist Ron Conway, his wife Gayle, and sons Ronny, Topher and Danny, to help fund the outpatient medical building at the new UCSF Medical Center at Mission Bay, which opens on Feb. 1 on UCSF’s world-renowned biomedical research campus. The outpatient medical building, a 207,500-square-foot facility that anchors the hospital complex, will house outpatient services for women, children and cancer patients.

In honor of the Conways’ generosity, UCSF will name the outpatient building the UCSF Ron Conway Family Gateway Medical Building.

UCSF Medical Center at Mission Bay, a result of more than 10 years of planning and construction, comprises UCSF Benioff Children’s Hospital San Francisco, UCSF Betty Irene Moore Women’s Hospital and UCSF Bakar Cancer Hospital. The new facilities include a 289-bed hospital complex, with children’s emergency and outpatient services that will integrate research and medical advancements with patient-focused, compassionate care.​

Ron Conway is the founder of SV Angel and has worked with hundreds of startups including Google, Facebook, Zappos, Square, Airbnb, Dropbox, Pinterest  and Twitter. He also is a board member of the Salesforce.com Foundation and actively supports the tech civic organization sf.citi, College Track, Sandy Hook Promise, Americans for Responsible Solutions, Teach for America, THORN and Donors Choose.

“Ron and Gayle have been true partners with UCSF for more than a decade, and we are extremely grateful for their ongoing support. This building is significant for the connection it provides between the high-quality medical care patients will receive at our three specialty hospitals as inpatients, and the groundbreaking continuing care they will receive as outpatients,” said Sam Hawgood, M.B.B.S., chancellor of UCSF.

Ron Conway is a member of the UCSF Medical Center Campaign Cabinet and served on the UCSF Foundation Board for several years. He has been a generous fundraiser for and philanthropist to UCSF and in particular, UCSF Benioff Children’s Hospital San Francisco.

He also has been an active supporter of neurodegenerative disease research and treatment, through the UCSF Neuroscience Initiative, which brings together under one roof outstanding scientists and clinicians from multiple disciplines – and the core technologies that they need to be successful.

“Ron is known as an ‘angel’ investor, and that description certainly holds true for his passion to better the lives of patients at UCSF,” said Mark R. Laret, CEO of UCSF Medical Center and UCSF Benioff Children’s Hospitals. “As a public medical center, we depend on the generosity of people like Ron and Gayle to continue serving the patients of San Francisco as well as Northern California and beyond. The Conways have been generous not just through financial gifts but with their time, introducing UCSF to their colleagues throughout the technology sector and Silicon Valley in order to advance our mission of care, research and education.”

The UCSF Ron Conway Family Gateway Medical Building is expected to draw more than 1,500 outpatient visits daily, as well as serve as a teaching facility for students. It includes a cancer clinic and women’s health clinic, and pediatric clinic. Some outpatient clinics will begin opening on Jan. 26.

The new medical center, strategically located on UCSF’s 60.2-acre Mission Bay research campus, will enhance UCSF’s ecosystem of innovation by putting physicians in close proximity to researchers and near biotechnology and pharmaceutical companies in Mission Bay and beyond. The new cancer hospital, for example, will sit near the UCSF Helen Diller Family Cancer Research Building, where every day leading scientists are seeking causes and cures for cancer.

UCSF Medical Center at Mission Bay also will feature the only operating hospital helipad in San Francisco to transport critically ill babies, children and pregnant women to the medical center from outlying hospitals.

“Gayle and I are proud to partner with UCSF to improve the health of the Bay Area. We have watched UCSF Medical Center at Mission Bay grow from a concept to a magnificent hospital complex, and can think of no better investment than supporting patients who are accessing needed outpatient medical services,” Ron Conway said. “We encourage others to get involved with the new medical center philanthropically, as well as other programs at this leading institution.”

The total $1.5 billion cost of the Mission Bay Hospitals Project has been funded by UCSF Medical Center financing and private philanthropy. Of the $600 million fundraising goal, UCSF has raised $550 million.

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Caring for the child’s brain


Pediatric Brain Center provides holistic care for patients’ full range of brain-related needs.

Audrey Price

By Kathleen Masterson, UC San Francisco

Fifteen-year-old Audrey Price slowly reaches for an orange plastic cup sitting on the counter. In a concerted effort, her fingers close around it, and she lifts it to chest height, shaking ever so slightly.

For Audrey, this simple act marks a tremendous journey from diagnosis to brain surgery to therapy and slow healing.

Just 11 months ago, she was living a typical middle-schooler’s life in a Bay Area suburb, hanging out with friends, playing tennis and obsessing over the British boy band, One Direction.

Then Audrey began developing weakness in her right side. After a series of doctor’s appointments, she ended up visiting a neurologist, who ordered scans of her brain that showed an aneurysm the size of a golf ball pressing on her brain stem.

That’s when her neurologist called UC San Francisco.

Audrey was brought into the newly formed Pediatric Brain Center at the UCSF Benioff Children’s Hospital San Francisco, which integrates neurology, neurosurgery, physical and occupational therapy, speech, social work and neuro-psychology to provide seamless holistic care for patients’ full range of brain-related needs. It’s one of just a few specialized pediatric brain centers in the U.S.

The center’s unique structure and specializations ended up being an ideal match for Audrey’s rare and complex condition.

Heather Fullerton and Nalin Gupta lead UC San Francisco's Pediatric Brain Center, which opens a new, centralized location at the new UCSF Benioff Children's Hospital at Mission Bay on Feb. 1. (Photo by Cindy Chew)

Bringing the doctors to the patient

The Pediatric Brain Center was founded about two years ago, spearheaded by Heather Fullerton, M.D., and Nalin Gupta, M.D. The center brings together a diverse range of UCSF experts from across multiple departments to treat patients together, as a team.

Rather than the typical experience in which a patient may see one doctor and then be referred to another specialist, and then another, chasing multiple appointments over weeks, at the Pediatric Brain Center the physicians, nurses and other key staff coordinate the care around the patient. One coordinator books all the patient’s appointments, from check-ups to arranging tests to surgery, and each patient is treated by a team assembled specifically to meet his or her unique medical needs.

“The goal was to make not only the patient experience, but also the problem solving and treatment, more rational. We wanted to be able to design our care around the patient’s medical issue, as opposed to simply following the organizational structure of the institution,” said Gupta.

Initially the center existed mainly as an organization change, with all the experts still located in separate offices at Parnassus. With the Feb. 1 opening of the UCSF Medical Center at Mission Bay, the Pediatric Brain Center will soon have it’s own central location to further streamline the patient experience.

“It’s so much easier for the family to have one place to go for all their child’s care, all the way from the initial treatment to rehabilitation,” said Fullerton.

Unique expertise in research and care

Having a centralized space will help make the patient experience smoother, but the crux of the Pediatric Brain Center is its network of highly specialized researchers, clinicians and surgeons.

“Having clinicians and researchers together helps inform what we study,” said Fullerton, a practicing neurologist who also researches pediatric strokes. “So many of our clinicians are also researchers, so when a question comes up in clinic, we can use our own local expertise to start the search for an answer. For example if I keep seeing this strange-looking blood vessel, I can turn around and start a study to investigate what’s happening.”

That’s a distinct advantage of an academic medical center. Private practices couldn’t afford the freedom to develop deep expertise in narrow areas, said Gupta. Furthermore, a child’s brain isn’t like the adult brain; treating a growing brain requires specialized neurology expertise.

“With the Pediatric Brain Center, we’re explicitly trying to leverage the strengths of the institution,” said Gupta. “We have people that have lot of expertise in narrow areas, and by definition those are often rare things.”

Building a specialized team

The Pediatric Brain Center brings all these diverse experts together, forming a unique treatment team made up of specialists relevant to each patient’s needs.

That’s vital for patients like Audrey, said Gupta.

“What Audrey had was very rare and complex. She’s an example of type of patient that there isn’t a list of 500 patients like that,” he said. “It’s not like other conditions where we could simply look to see what did we do for last 500.”

So Audrey’s doctors assembled a team of neurologists and neurosurgeons to develop a plan to remove the brain aneurysm.

“Audrey’s surgical team in consultation was so calm, they really explained things really well in terms we understood,” said her mother, Barbara Price. “We left there feeling very relieved this was treatable, that we were not in emergency situation and we had one of best surgical teams in the world that would treat her.”

Audrey’s surgery went well, and the team was able to remove the brain aneurism safely.

However, when she came out of surgery, she could hardly move the right side of her body. Her doctors quickly called in another team member, Jonathan Bixby, M.D., who specializes in physical rehabilitation.

“Unlike some other aspects of medicine, rehabilitation is dependent on how much effort the patient puts in,” said Bixby.

“Audrey was great. With any patient dealing with significant changes to the body, there can be issues adjusting. Audrey adjusted quickly, and was very willing to work with a therapist.”

Ongoing team care

Audrey is continuing to get stronger every day. She does her physical therapy daily at home, has learned to do nearly everything with her left hand and was able to start high school last fall.

She got there after spending six weeks living at the hospital after her surgery; she practiced physical therapy six hours a day, six days a week. It’s exhausting work, but her therapists strived to incorporate Audrey’s interests into her exercises to make it more fun, including using therapy dogs and playing One Direction’s music during sessions.

“The hardest part is not knowing when my body is going to be back to the way it was,” she said. “The doctors said, ‘all brains are different,’ and that was the most frustrating part.”

Throughout her hospital stay, her bed was covered in a fleece blanket with the One Direction’s faces on it, including her favorite singer, Niall.

Barbara Price recalled that one day Audrey came back to her room to find a note atop her One Direction blanket that read something like: “‘Dear Audrey, I’m really proud of all the hard work you’re doing’ then the note quoted lyrics from one of the songs. It was signed,  ‘Love, Niall,” she said with a laugh. One of the doctors had scripted this joking note of encouragement.

“The team was so funny and thoughtful, so we had a lot of laughs that got us through some tough times.”

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UCSF, CMC sign letter of intent to increase pediatric, women’s health services


Collaboration to expand services in Valley would build on foundation of existing relationship.

By Karin Rush-Monroe, UC San Francisco

UCSF Medical Center and Community Medical Centers (CMC) have signed a letter of intent (LOI) to expand women’s and children’s services to the Central Valley, which has an undersupply of specialists for a growing population. The collaboration also would broaden medical education services in the area.

CMC, a Fresno-based regional health system, owns and operates Community Regional Medical Center (CRMC) and other licensed general acute care hospitals and outpatient centers in Fresno and Clovis that serve Fresno County and the surrounding counties.

“The delivery of health care is changing. We’re going to rely on medical information technology and strong alliances with private and academic physicians to more efficiently manage the health of entire families. This project with UCSF will be a key part of that,” said Craig Wagoner, CEO at Community Regional Medical Center.

The shared vision of CMC and UCSF includes development of a clinically integrated health system to facilitate better sharing of information in order to manage patient health; improved access to high-quality pediatric services in Fresno and surrounding communities; higher acuity pediatric services at CRMC to reduce the need for patients’ families to travel outside of Fresno; and increased integration of the academic and training missions of UCSF and CRMC.

An immediate goal for 2015 is to increase the availability of specialists at CRMC by this summer.

UCSF School of Medicine, which consistently is ranked among the nation’s top medical schools, has for decades operated a graduate medical education program in collaboration with Community, the San Joaquin Valley’s largest hospital organization.

About 300 UCSF medical residents and fellows currently practice on the Community Regional Medical Center campus, which is the Valley’s Level 1 trauma center. Pediatrics is one of 22 specialties currently offered in the Fresno-based graduate medical education program.

The collaboration among UCSF Fresno, CRMC and Valley Children’s Healthcare has afforded UCSF residents the ability to receive high-quality residency training across the entire spectrum of pediatric needs within a diverse set of clinical settings. UCSF remains firmly committed to maintaining and strengthening this long-time, top-ranked pediatric residency program for the benefit of patients, the community and the entire San Joaquin Valley.

“This is the next logical step in our relationship with Community,” said Michael Peterson, M.D., interim associate dean for UCSF Fresno. “The medical school is committed to serving the Valley, and our leadership team in San Francisco is excited about the opportunity to partner with the Community Regional Medical Center and build a leading-edge women’s and children’s program.”

“We have a great relationship with Fresno and the Central Valley, and this partnership with Community Medical Centers will strengthen that relationship,” said Stephen Wilson, M.D., Ph.D., associate chief medical officer for UCSF Benioff Children’s Hospital San Francisco. “This is an opportunity to better integrate our women’s and children’s services in the region and support UCSF’s mission to provide care to patients in areas that are underserved.”

UCSF has been providing services in Fresno for decades. Established in 1975 and now celebrating its 40th anniversary, the UCSF Fresno Medical Education Program plays a substantial role in providing health care services to residents of California’s San Joaquin Valley and training medical professionals in the region. A clinical branch of UCSF, the Fresno medical education program has trained approximately one-third of Central San Joaquin Valley physicians.

Faculty and medical residents at UCSF Fresno engage in a broad spectrum of research addressing health issues pertinent to the Valley. Faculty and residents also care for the overwhelming majority of the region’s underserved populations at health care facilities like CRMC.

In addition, UCSF Fresno provides academic preparation programs for middle- and high school students interested in the health professions through the Junior Doctors Academy and the Doctors Academy. UCSF Fresno academically prepares students at Fresno State to become competitive applicants to health professional schools and ultimately aims to prepare them for careers in health and medicine. UCSF Fresno also is a key partner in the UC Merced San Joaquin Valley Program in Medical Education.

The collaboration is anticipated to be finalized in the fall of 2015.

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Tiny infant has big impact on his community


Tiny Smiles Half Marathon is scheduled for Feb. 7.

By Tricia Tomiyoshi, UC Davis

“Miles” Keiser, though nicknamed “Tiny” by his family, an infant treated at UC Davis Children’s Hospital in 2011, is having a big effect on the lives of children with congenital heart disease in Sacramento and on his community.

Born in Northern California in June 2011, Tiny would undergo the first of three planned surgeries to correct hypoplastic left heart syndrome 10 days after birth, and would be treated afterward in the UC Davis Children’s Hospital Pediatric Intensive Care Unit/Pediatric Cardiac Intensive Care Unit.

The infant received his diminutive nickname from his pre-adoptive parents, Rick and Jean Keiser of Galt, who already had adopted two of Tiny’s siblings and were in the process of adopting their brother.

Tiny would spend most of his young life with his family at the hospital, punctuated by short visits in the Keiser home. The Keiser family was always by his side. Despite the best efforts of his physicians, chief among them associate professor of surgery and pediatrics Gary Raff, in December of 2011 Tiny lost his struggle to survive at just 6 months of age.

“We made some great friends in the hospital, including Dr. Raff and his team, all of the physicians in the PICU/PCICU and his cardiologists Michael Choy and Mark Parrish,” Rick Keiser said. “Everyone was amazing, from the housekeeping staff to Dr. Raff. They were incredible.”

After struggling with the loss of their child, the Keisers decided to establish a commemorative race in Tiny’s honor, the Tiny Smiles Half Marathon – “the tiny half,” to give back to the Children’s Hospital and other pediatric cardiac organizations. This year, 2015, Tiny Smiles has made the Children’s Heart Foundation one of its beneficiaries.

The Tiny Smiles Half Marathon is scheduled for Saturday, Feb. 7. On-site registration starts at 6 a.m. and the event ends at noon. It will combine a half-marathon of 13.1 miles starting at 8 a.m.; a 5 kilometer and 10 kilometer race starting at 8:15 a.m.; and a kids’ fun run starting at 9 a.m.

The race starts at Civic Drive and Chabolla Avenue in Galt; it ends at the Galt Fairgrounds. The half-marathon registration fee is $70; the 5k and 10k registration fee is $40. Registration closes on Thursday, Feb. 7, and is available through this link.

Tiny Smiles already has had some fundraising successes, including holding multiple blood drives and raising more than $10,000 for the UC Davis Children’s Hospital Pediatric Intensive Care Unit/Pediatric Cardiac Intensive Care Unit. Race sponsors include Fleet Feet Sports of Stockton; Central Valley Physical Therapy; SMUD, UC Davis Children’s Hospital, The City of Galt, Pro Transport Ambulance, The Taylor Family Foundation, Spaans Cookies and more.

For additional information about the race, please contact Rick Keiser at rick@tinysmilesrace.org, or (209) 329-4692.

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Project ADAM’s first California affiliate established at UC Davis


Program helps prevent sudden cardiac arrest in children and teens.

Stuart Berger, UC Davis

By Tricia Tomiyoshi, UC Davis

A life-saving program that helps to prevent sudden cardiac arrest in children and teens has now arrived in California.

UC Davis Children’s Hospital in Sacramento has become the first California affiliate for Project ADAM (Automated Defibrillators in Adam’s Memory), a nonprofit organization dedicated to establishing comprehensive defibrillation programs in schools across the country. The program’s mission is to reach out to schools to ensure that automated external defibrillators (AEDs) are installed and that staff, faculty, students and families are trained how to use them and to perform CPR.

Stuart Berger, chief of the Division of Pediatric Cardiology at UC Davis Children’s Hospital, founded Project ADAM while he was working at the Children’s Hospital of Wisconsin in 1999. The program has since expanded to 10 states in its 15 years of operation and more than 85 lives have been saved in children and adolescents as well as adults.

“I’m very excited to bring Project ADAM to the Sacramento region,” said Berger. ”This has been such a wonderful community outreach project. It has brought the community together at multiple levels and it has saved livesIt would be wonderful to institute this program in every school in the state of California as well as in the entire country.”

The Sacramento Kings will host a night dedicated to heart health awareness on Feb. 20. A portion of proceeds from tickets purchased through this ticket link (using passcode: Kings) will be donated to the Sacramento Project ADAM.

Project ADAM was named in honor of 17-year-old Wisconsin high school basketball player, Adam Lemel, who died on the court due to an undiagnosed genetic heart condition. According to Berger, at least 100 to 200 children and teens experience sudden non-traumatic cardiac death each year in the U.S., although the exact number is unclear and this number could be an underestimate of the true incidence. Multiple studies, including the new National Institutes of Health and Centers for Disease Control and Prevention’s Sudden Death in the Young registry, have been designed to get more specific data about the incidence of this devastating problem.

Schools, organizations and community members interested in being a part of Sacramento Project ADAM are welcome to attend the next community meeting on Thursday, Jan. 29, at 5:30 p.m. at the UC Davis Health System Facilities Support Services Building, 4800 2nd Ave., Sacramento in Room 2030.

For more information, please contact Amber Lindgren, administrator for the Sacramento Project ADAM, at (916) 734-2460 or amber.lindgren@ucdmc.ucdavis.edu.

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Risk of brain disorder rare in healthy newborns with jaundice


UCSF-Kaiser study shows high bilirubin alone rarely causes type of cerebral palsy.

By Suzanne Leigh, UC San Francisco

A study tracking more than 100,000 infants has shown that newborns with jaundice that are otherwise healthy are highly unlikely to develop a severe and potentially deadly form of cerebral palsy.

Researchers at UCSF Benioff Children’s Hospital San Francisco and the Kaiser Permanente Northern California Division of Research sought to examine the correlation between elevated levels of the liver-produced pigment bilirubin, which causes the yellowing of the skin and eyes associated with jaundice, and cerebral palsy — a range of disorders that impairs control of movement. The team was especially interested in kernicterus, a rare and life-threatening type of cerebral palsy triggered by escalating bilirubin that injures the brain.

Jaundice occurs in most newborns because the immature liver is unable to break down the pigment fast enough. Treatment is not usually required, but in some cases babies undergo phototherapy, in which they are exposed to special lights that change bilirubin into a compound that can be excreted.

In cases when very high bilirubin fails to drop, an infant may have an exchange transfusion, which is the replacement of blood with donor blood.

The study, which evaluated the health records of two groups of babies selected from 525,409 births, was led by Yvonne W. Wu, M.D., M.P.H., professor of clinical neurology and pediatrics at UCSF Benioff Children’s Hospital San Francisco. The babies had been born at 15 hospitals within the Kaiser Permanente Northern California region from 1995 through 2011. One group comprised 1,833 newborns with levels of bilirubin above those at which the American Academy of Pediatrics (AAP) recommends exchange transfusions. The second group was made up of 104,716 randomly sampled newborns, born at least 35 weeks’ gestation with lower levels of the pigment. The two groups were followed for an average of seven and six years respectively.

The researchers, whose work was published on Jan. 5 in the journal JAMA Pediatrics, confirmed three cases of kernicterus based on the brain MRIs of children with cerebral palsy. All three cases had occurred in newborns with the highest levels of bilirubin. But further study revealed that each child had two or more risk factors for brain damage.

“We found that cerebral palsy consistent with kernicterus did not occur in a single infant with high bilirubin without the presence of additional risk factors for neurotoxicity, such as prematurity, sepsis and the hereditary blood disorder G6PD deficiency. This was the case even in infants with very high bilirubin,” said second author Michael W. Kuzniewicz, M.D., M.P.H., assistant professor of neonatology in the department of pediatrics at UCSF Benioff Children’s Hospital San Francisco, and head of the perinatal research unit of the division of research at Kaiser Permanente Northern California.

In 2004, the AAP published a guideline for treating infants whose bilirubin remained high despite phototherapy. It recommended exchange transfusions based on the level of bilirubin, the age of the infant and other risk factors for brain damage.

“Our study was the first to evaluate how well the exchange transfusion guidelines predicted risk of cerebral palsy and kernicterus in babies with jaundice,” said principal investigator Thomas B. Newman, M.D., M.P.H., of the departments of epidemiology and pediatrics at UCSF Benioff Children’s Hospital San Francisco. “It was reassuring that brain injury due to high bilirubin was rare and that only those infants whose levels were well above exchange transfusion guidelines developed kernicterus.”

An exchange transfusion is an invasive procedure that entails risks to the baby, such as blood clot formation, blood pressure instability, bleeding and changes in blood chemistry, said Wu. “Based on our study, the current guidelines for when to perform exchange transfusions have been quite successful in preventing kernicterus. However, our study also raises the question whether the threshold for exchange transfusion could be higher for infants with high bilirubin levels who are otherwise healthy and who have no other risk factors for brain injury,” she said.

Co-authors of the study are Andrea C. Wickremasinghe, M.D., and Charles E. McCulloch, Ph.D., of the Department of Epidemiology and Biostatistics at UCSF; and Eileen M. Walsh, R.N., M.P.H., and Soora Wi, M.P.H., of the Kaiser Permanente Northern California Division of Research.

Funding was provided by a grant from the Agency for Healthcare Research and Quality.

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Microbiome, bioinformatics expert joins UC San Diego faculty


Rob Knight has joined as professor of pediatrics with affiliate appointment in engineering.

Rob Knight has joined UC San Diego's faculty.

By Doug Ramsey, UC San Diego

A leading expert on microbiomes and bioinformatics, Rob Knight will be devoting some of his time to doing collaborative research in the Computer Science and Engineering (CSE) department at UC San Diego’s Jacobs School of Engineering. The department confirmed Knight’s joint appointment in CSE as a faculty affiliate, following the Jan. 5 announcement from the UC San Diego School of Medicine that Knight has joined that school’s faculty as a professor in the Department of Pediatrics. The CSE appointment was effective Jan. 1, 2015.

In making that announcement, Dr. David Brenner, vice chancellor for UC San Diego Health Sciences and dean of the School of Medicine, cited Knight’s “pioneering work at the University of Colorado at Boulder [which] helped reveal the astonishing diversity of microbes living in and on us.”

Knight is widely renowned for his early and innovative investigations of the symbiotic relationships between microbial life and humans. He has been a Howard Hughes Medical Institute early career scientist, a TED speaker and co-founder of the American Gut Project, an ambitious effort to sequence the microbial population of the human gut using crowd-sourced samples and data.

In pediatrics, Knight and his lab will continue to investigate how the human microbiome develops and how microbial variation impacts an individual’s health and susceptibility to disease. To do so, Knight aims to sequence the mass of genes from microbial communities and develop new computational tools to count and compare species. He is also a member of the Steering Committee of the Earth Microbiome Project.

“Rob Knight is a welcome addition to our faculty as CSE builds upon its existing strengths in bioinformatics, computational and systems biology,” said CSE Chair Rajesh Gupta. “Going forward, we see professor Knight working in close collaboration with faculty advancing the presence of bioinformatics at UC San Diego, including professors Pavel Pevzner, Vineet Bafna, Nuno Bandeira and Larry Smarr.”

“Working with excellent CSE faculty was a major draw in deciding to choose UC San Diego over other institutions,” said Knight. “Pavel Pevzner’s book on ‘Computational Molecular Biology’ was a huge influence on me in graduate school, and we plan to adapt our tools to interface with Nuno Bandeira’s computational tools.”

CSE’s Smarr, who also directs the California Institute for Telecommunications and Information Technology (Calit2), notes that Knight is bringing with him a group of more than two-dozen students and researchers. Given that his own work in quantitative health has moved increasingly into the study of microbiomes, Smarr says that he plans to unify his microbiome work with Knight’s much large microbiome team.

“Calit2′s Qualcomm Institute looks forward to collaborating closely with Rob Knight’s group,” said Smarr. “The cyberinfrastructure for Big Data that Calit2, CSE and the San Diego Supercomputer Center have been pioneering will find a strong application driver in Rob’s frontier microbiome research.”

“UC San Diego’s new microbiome initiative provides a unique combination of tools to read out the microbiome and analyze the resulting data, including DNA-based analysis and metabolomics, germ-free mouse facilities, high-throughput culturing, oligosaccharide profiling, immunological profiling and high-performance computing,” said Knight. “So the prospects for advancing the field as a whole, and for making truly significant progress on connecting the microbiome to human and planetary health at UC San Diego, are immense.”

The researcher previously used these technologies in distributed collaborations, especially those examining the role of the microbiome in obesity, malnutrition, and inflammatory bowel disease. Now, having all such facilities located in one place, together with the ability to collaborate closely with local companies such as Illumina and MO BIO Laboratories, and to work with algorithm, database and systems experts in CSE, will dramatically accelerate microbiome research.

Knight, who earned his doctorate in ecology and evolutionary biology at Princeton University, is self-taught in computational biology, and he uses bioinformatics algorithms to develop phylogenic trees of myriad and previously unknown bacteria, grouping them into communities according to the evolutionary descent of the microbes they contain. He has proved to be a prolific and highly collaborative investigator across multiple disciplines. Knight has published papers discussing prairie soil and ocean water, toothbrushes, frog skin and the various roles of viruses, bacteria, fungi, other microbial eukaryotes and archaea, a domain of single-celled microorganisms. He is particularly noted for exploiting DNA sequencing technologies to differentiate unknown microbes based upon a single gene known as 16S ribosomal RNA. However, Knight says, new collaborations to extend this work to functional profiling of genes, gene expression, and metabolites both “provide a range of interesting algorithmic and data management challenges, including many projects in which students can get involved directly now, and will provide fundamental new insights with practical applications into the microbial sides of ourselves.”

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UC Davis heart surgeon publishes his model for medical humanitarian aid


J. Nilas Young details a quarter century of establishing cardiac surgery sites in Russia.

J. Nilas Young, UC Davis

By Karen Finney, UC Davis

J. Nilas Young, UC Davis chief of cardiothoracic surgery, has published a landmark article on medical humanitarian aid, detailing his 25 years of experience establishing six cardiac surgery sites in Russia.

The article appears in the December 2014 issue of the prestigious Journal of Thoracic and Cardiovascular Surgery and is also available online.

Young’s UC Davis co-authors were pediatric cardiac surgeon Gary Raff and pediatric critical care physician James Marcin, and his collaborators included colleagues at the Mayo Clinic, Emory University, Childrens Hospital of Wisconsin, Nationwide Childrens Hospital and the Siberian Branch of the Russian Academy of Medical Science.

The article emphasizes the approach of Heart to Heart International Children’s Medical Alliance in developing sustainable medical aid programs with high-quality outcomes, scalability and efficacy. Although focused on a specific class of diseases (congenital heart diseases), the authors believe the model is applicable to other medical humanitarian projects, particularly those that involve complex surgical interventions.

In 2012, Young received the the World of Children Health Award — hailed as the “Nobel Prize for child advocates” — for his international humanitarian efforts to improve pediatric heart care (read the press release).

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Boy with rare disease delivers 1,000 toys to Mattel Children’s Hospital UCLA


Casey Abrams, 11, has organized toy drives for the hospital for the past four years.

On Dec. 22, Casey Abrams, 11, delivered roughly 1,000 toys to Mattel Children's Hospital UCLA, where he has spent many holidays and birthdays and built a special bond with the hospital staff and volunteers. (Photo by Amy Albin, UCLA)

By Amy Albin, UCLA

Casey Abrams is only 11 years old, but he managed to deliver approximately 1,000 toys to the Chase Child Life program at Mattel Children’s Hospital UCLA today (Dec. 22).

Casey, who suffers from a very rare progressive and degenerative disease of his intestines, has been a frequent patient at UCLA since birth. His life is threatened by this disease and the complications that come along with it.  Since he has had to spend many holidays and birthdays in the hospital, he has formed a very special bond with the doctors, nurses, staff and volunteers.

Five years ago, he decided that he wanted to give the other kids at the hospital an awesome holiday. So he started collecting donated toys from community groups, ranging from a Brownie troop to car and motorcycle clubs, Uncle Milton Industries and Wish Sotheby’s International Realty. This was the fifth annual toy drive Casey organized. The Chase Child Life program not only distributes toys during the holiday season, but also on patients’ birthdays and when they undergo procedures.

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UC Davis Children’s Hospital opens pulmonary hypertension clinic


Clinic is open weekly on Wednesday mornings.

Stuart Berger, UC Davis

By Tricia Tomiyoshi, UC Davis

Pediatric pulmonary hypertension patients in the Sacramento region can now get the specialty care that they need close to home, thanks to the new pulmonary hypertension clinic at UC Davis Pediatric Heart Center.

The clinic provides a multidisciplinary program, staffed by international experts with advanced expertise in pulmonary hypertension treatment.

“We have an exceptional team of specialists from neonatology, pulmonary, critical care medicine and cardiology,” said Stuart Berger, director of pediatric cardiology, who launched the clinic. “Families in Sacramento frequently need to go to the Bay Area for further diagnostic studies, but now that is no longer necessary. We are a fully equipped center that can provide assistance for children in this region.”

Pulmonary hypertension is high blood pressure in the arteries of the lungs, often linked with certain heart, pulmonary or autoimmune blood diseases. Current therapies can profoundly improve patient outcomes.

Previous to his appointment at UC Davis Children’s Hospital this year, Berger led a successful pediatric pulmonary hypertension clinic at Milwaukee Children’s Hospital.

The UC Davis clinic is open weekly on Wednesday mornings and appointments can be made by referring physicians by calling (916) 734-3456.

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Helping seriously ill children and their families cope with the unfathomable


Hospital team delivers compassionate care as a child dies.

UCLA social worker Gina Korfeind, a member of the Children's Pain and Comfort Care team based at Mattel Children's Hospital, and some of the families the team has helped get through the trauma of losing a child or sibling. (Photo by Ann Johansson)

By Marina Dundjerski

The news Jeannie Malabanan received last January was devastating. Following a year of difficult and aggressive chemotherapy for a rare bone tumor, the cancer at the base of her daughter Ashlee’s spine had metastasized to her brain. After a recurrence of her symptoms, Ashlee began to have seizures and was re-hospitalized at UCLA.

That’s when the Children’s Pain and Comfort Care (CPCC) team was called in to assist. “They talked to us and supported us, and provided Ashlee with as much quality care as was possible during this end-stage of her life,” Malabanan said. “Basically, they helped our family to process and survive this ordeal.”

Ashlee decided to forego further treatment and to stay in the hospital. “It was a hard choice for us to accept — as a parent, you want to keep your child alive for as long as you can,” her mother said. “But I know keeping Ashlee alive was not what she wanted. She didn’t want to just be breathing and not have any quality of life.”

During the two weeks when Ashlee was hospitalized, the CPCC team worked with her primary medical team and others to provide whatever assistance was possible. “They came by regularly to make sure her last days were as comfortable as possible as she fell deeper into her terminal illness,” Malabanan recalled. “They let us know that we were not alone and that if we wanted them, they would be with us every step of the way.”

The Chase Child Life Program of Mattel Children’s Hospital UCLA created a plaque with Ashlee’s palm print, and the CPCC team had her fingerprint replicated on more than a dozen pendants for family members to wear. When Ashlee lost consciousness, her wishes were known. Arrangements were made so that family members could stay with her; they never left Ashlee’s side until the end. She was 21 years old when she died.

Since it was established in 2008, UCLA’s CPCC program in Mattel Children’s Hospital UCLA has worked to succor pediatric, adolescent and young-adult patients like Ashlee in their days of need and to help their families grapple with the unfathomable: the death of a child. While the broad-based CPCC team includes a psychologist, three physicians, nurse practitioner, a social worker bereavement coordinator and chaplain, among others, the frontline clinical-service team, including physicians and nurse practitioner, sees some 200 patients a year in the hospital setting and another 325 patients through its outpatient clinic.

Taking an interdisciplinary approach to address the core goals of care decisions, pain and symptom management and bereavement support, the team has a mission to enhance the comfort and quality of life for children with complex medical conditions and for their families. They work to relieve symptoms of disease or its treatment and to address psychological, social and spiritual needs.

Said Malabanan: “That extra support and compassion is amazing. I’m so grateful that they were there for Ashlee and for us.”

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Boy battling cancer honored as UCLA’s No. 1 sports fan


He’s chosen as first Kid Captain by the basketball team and Mattel Children’s Hospital UCLA.

Logan Nobriga, with ball, and friends cheering at Bruins basketball game.

By Amy Albin, UCLA

Logan Nobriga, a 10-year-old-boy who is battling cancer, never expected he’d see his story played out on the giant monitor at Pauley Pavilion. But on Wednesday, he stood on the basketball court before the tip-off of a game watching a video about the fight of his young life.

Logan, who comes from Oak Park, was honored at the Bruins’ game against UC Riverside as the first “Kid Captain” selected by Mattel Children’s Hospital UCLA and the UCLA Men’s Basketball team. The new program will recognize UCLA pediatric patients who face life-threatening illnesses with courage, strength and determination.

Logan, who has spent half of his young life in the battle against acute lymphoblastic leukemia (ALL), is an inspiration to everyone, a hospital staff member said.

“Logan, who transforms his hospital room into a ‘sports zone,’ has been known to play a couple of wild games of basketball in the hospital, even when he was in the intensive care unit,” said Hilary Gan, a child-life specialist with the Chase Child Life program at Mattel. “Recently, he donated his birthday presents to the other children in the hospital.”

On Wednesday night, Logan high-fived Bruin players as they entered the court at the start of the game and then took a complimentary courtside seat with a friend he invited before having dinner at Pauley Pavilion.

“My college basketball team is definitely UCLA,” said Logan, a huge sports fan, in the video.

IIn 2009, he was diagnosed with ALL, a type of cancer of the blood and bone marrow. In 2013, he relapsed and is currently receiving chemotherapy as an outpatient.

“Having ALL … you don’t get to do a lot of other things that kids do,” he said on the video. So being treated as UCLA’s No. 1 Bruin fan with all the perks, including getting the game ball, was a special moment for him.

“We are excited to partner with our colleagues at Mattel Children’s Hospital UCLA to recognize these special young patients who inspire us all with their stories of hope and courage,” added Paul Engl, general manager of IMG College Los Angeles, the official sports marketing agency for UCLA Athletics.

See Logan’s story:

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