Donor dollars play an essential role in supporting discoveryand innovation at the laboratory bench and the bedside.
Dr. Nino Ramirez joined Seattle Children’s with the audacious goal of having researchers from different specialities work side by side rather than in silos. “I can honestly say that without the guild association money, I could not have built this center,” says Ramirez, pictured with lab technician TatianaAnderson, a UW graduate student pursuing her doctorate.
Dr. Nino Ramirez dreamed ofrevolutionizing the way scientistsstudy brain disease. In his vision, topspecialists from different fields wouldwork side by side on a daily basis.
That’s a far cry from research asusual – where geneticists work withother geneticists, neurologists workwith other neurologists, etc. – but a farmore effective way to piece togetherthe complex causes of epilepsy,hydrocephalus and other childhoodbrain disorders.
Ramirez likens the approach to anorchestra where the musicians playdifferent instruments but collaborateto bring a symphony to life. “No singlespecialty can unravel all the facets ofhow the brain works and what causesbrain disease,” he says. “Meldingdifferent talents and ideas is the onlyway to make the discoveries that willlead to new treatments and cures.”
Three years ago, Ramirez got toput his dream into practice when Seattle Children’s Research Institute recruited him from the Universityof Chicago to start the Center for Integrative Brain Research (CIBR).Members of the Seattle Children’s Hospital Guild Association madethis high-profile feat possible witha $750,000 commitment that theresearch institute matched dollarfor dollar.
“You feel an extra responsibilitybecause of the faith – and the funds –invested in you.”
The guild association gift not onlysupported his salary but also helpedRamirez launch new research projectsand attract other investigators. “I canhonestly say that without the guild association money, I could not havebuilt this center.”
Donor dollars bridge gap
“Our members love knowing they’re helpinglaunch programs that will change the waychildhood illness is treated and cured,” saysAileen Kelly, who leads the guild association.
Donor dollars, like those from the guild association, help bridge a funding gapfor Children’s researchers and clinicians who are launching new programs andstarting new projects.
“About 20% of our research budgetcomes from philanthropy, but that 20%has a huge ripple effect,” says Dr. JimHendricks, president of the researchinstitute. “That money helps ourscientists lay the groundwork to applyfor federal funding and move theirideas ahead.”
The federal government providesthe bulk of funding for medical researchat Children’s and across the country – primarily through the National Institutesof Health (NIH). But that funding oftencomes with strings that tie the moneyto pursuing very specific objectivesand projects that have already showncompelling initial results. It’s a classic catch-22: New ideas must show resultsbefore the NIH will fund them, but theNIH doesn’t fund the work needed toproduce the results. “The NIH doesn’tlike to take big risks, but in researchbig risks can move ideas forward,”Ramirez says.
Donors more vital than ever
Advanced technology enables doctors andresearchers at Seattle Children’s to performfunctional brain mapping that provides detailedanatomy of the brain.
Members of the guild associationprimarily raise funds for uncompensatedcare, but for nearly 20 years theassociation’s Funding Focus programhas directed a portion of the moneyto important research and patientcare priorities.
“These dollars are so importantbecause they’re not restricted to specificprojects. Scientists and doctors can usethem where they believe they’ll makethe greatest difference,” says AileenKelly, who leads the guild association. “Our members love knowing they’rehelping launch new programs that willchange the way childhood illnessesare treated and cured.”
The guild association commitmentmade a big impression when Ramirez began recruiting other researchersto join the CIBR. Many left securepositions at established institutionsbecause they wanted the freedomto work toward the next big thing. Itwas important for them to know thatdonors are willing to help – especiallythese days when federal support formedical research is dwindling.
“Scientists know that access tophilanthropy is more vital than ever,”Ramirez says. “Donors aren’t justpeople who write checks. They aretrue partners in the research processwho often have a personal stake inthe outcome.”
“As donors,we want toaccelerate criticaldiscoveries. Wewant the word'cure' to becomea scientific reality.”
That personal connection to peoplecounting on them ups the urgencyante for researchers. “You feel anextra responsibility to make progressbecause of the faith – and funds – invested in you,” Ramirez says.
Tackling Tourette syndrome
Dr. Nino Ramirez gives John Leslie a tour of the laboratory in the Jack R. MacDonald Building of Seattle Children’sResearch Institute in downtown Seattle.
Jeanne Tweten and Jim Leslie ofSeattle are investing their faith anda leadership gift from their familyfoundation so Ramirez can start aprogram within CIBR to study impulsecontrol disorders, a group of disorderscaused by the brain’s inability toprioritize and control its impulses.The couple’s son, John, has Tourettesyndrome (TS).
“People see the tics and think that’sall there is to TS, but it deeply affectsa child’s cognition, emotion, memoryand behavior,” says Tweten. “They don’trealize how profoundly it impacts theentire family’s ability to function. Iremember crying many evenings andwondering how our family was goingto make it through,” she recalls.
Seeing how Tourette syndrome (TS)affectsthe life of their son inspired Jeanne Twetenand Jim Leslie (above) to help Dr. Nino Ramirezlaunch a program to study brain disorders.
Things are better now for John, butTourette syndrome – and otherimpulse control disorders like ADHD,addiction and depression – lacks acure. Existing medications focus ontamping down impulsive behaviors, butthey are often ineffective and cancause severe side effects.
The current thrust of research inthis area is to make better medicines totreat the symptoms. Ramirez’s programis turning that approach on its head:Rather than focusing on the effects ofimpulse control disorders, the team isdedicated to finding and understandingthe causes – the first step to clearinga path to effective new treatments andpossibly cures.
Tweten and her husband approachedRamirez about starting a program forimpulse control disorders because theyare confident his approach will succeed. “At CIBR, they combine efforts andshare ideas. That’s how cures are found,”Tweten says. “If anybody can do it,Nino can.”
As the program begins to takeshape, the couple feels almost likemembers of the research team. “Nino’s team advances research inways others thought impossible. Asdonors, we hope to accelerate thesecritical discoveries,” says Tweten. “We want the word 'cure' to becomea scientific reality.”
Coping with cancer
“Philanthropy gives us the flexibility to identify a patient need and respond immediately,” sayscancer specialist Dr. Rebecca Johnson, who launched a program designed to meet the unique needsof teens and young adults with cancer thanks to funding from the guild association.
Many teens and young adults withcancer fall into a gap between cancerprograms designed for youngerchildren and those designed for adults.Children’s Adolescent and Young Adult (AYA) Oncology Program is one of thefew programs in the country designedto meet the unique needs of cancerpatients from age 15 to their late 20s. Like CIBR, AYA was launched with aFunding Focus gift from the guildassociation.
AYA has used guild funds to addstaff, improve facilities, expand supportservices and study better ways to carefor AYA patients. “We’re now known asone of the top AYA programs in thecountry. That would not have happenedwithout philanthropy,” says Dr. Rebecca Johnson, who leads the program.
Guild funds free Johnson from thetime-intensive work of applying forindividual grants – which don’t alwayswin approval – every time she wantsto add something to the program. “Philanthropy gives us the flexibility toidentify a patient need and respondimmediately,” she says. “That’saccelerated our growth tremendously.”
Thanks to guild funding, AYA haspurchased fitness equipment, begunoffering fertility preservation and hiredan artist-in-residence to help patientstell their personal story through variouscreative media like poetry, photographyand videos.
“About 20% of our research budget comes fromphilanthropy, but that 20% has a huge ripple effect.”
Recently released on YouTube, the Good Times and Bald Times video series features AYA patients sharingtheir cancer experiences. “It’s a greatway to provide the peer support this age group needs and wants,” Johnsonsays, “but you’d have a hard timegetting a specific grant to do that.”
Next spring, the AYA unit will moveinto a dedicated space on the top floorof our Building Hope expansion. Guildmoney is helping purchase iPads, anXbox and other items that will improvethe day-to-day life for patients in thehospital. “Helping patients feel at homeduring a long stay in the hospital is animportant part of the healing process,”Kelly notes. “Guild members are proudto help meet that need.
Published in Connection magazine, December 2012