Donor dollars play an essential role in supporting discovery and 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 Tatiana Anderson, a UW graduate student pursuing her doctorate.
Dr. Nino Ramirez dreamed of revolutionizing the way scientists study brain disease. In his vision, top specialists from different fields would work side by side on a daily basis.
That’s a far cry from research as usual – where geneticists work with other geneticists, neurologists work with other neurologists, etc. – but a far more effective way to piece together the complex causes of epilepsy, hydrocephalus and other childhood brain disorders.
Ramirez likens the approach to an orchestra where the musicians play different instruments but collaborate to bring a symphony to life. “No single specialty can unravel all the facets of how the brain works and what causes brain disease,” he says. “Melding different talents and ideas is the only way to make the discoveries that will lead to new treatments and cures.”
Three years ago, Ramirez got to put his dream into practice when Seattle Children’s Research Institute recruited him from the University of Chicago to start the Center for Integrative Brain Research (CIBR). Members of the Seattle Children’s Hospital Guild Association made this high-profile feat possible with a $750,000 commitment that the research institute matched dollar for dollar.
“You feel an extra responsibility because of the faith – and the funds – invested in you.”
The guild association gift not only supported his salary but also helped Ramirez launch new research projects and attract other investigators. “I can honestly say that without the guild association money, I could not have built this center.”
Donor dollars bridge gap
“Our members love knowing they’re helping launch programs that will change the way childhood illness is treated and cured,” says Aileen Kelly, who leads the guild association.
Donor dollars, like those from the guild association, help bridge a funding gap for Children’s researchers and clinicians who are launching new programs and starting new projects.
“About 20% of our research budget comes from philanthropy, but that 20% has a huge ripple effect,” says Dr. Jim Hendricks, president of the research institute. “That money helps our scientists lay the groundwork to apply for federal funding and move their ideas ahead.”
The federal government provides the bulk of funding for medical research at Children’s and across the country – primarily through the National Institutes of Health (NIH). But that funding often comes with strings that tie the money to pursuing very specific objectives and projects that have already shown compelling initial results. It’s a classic catch-22: New ideas must show results before the NIH will fund them, but the NIH doesn’t fund the work needed to produce the results. “The NIH doesn’t like to take big risks, but in research big risks can move ideas forward,” Ramirez says.
Donors more vital than ever
Advanced technology enables doctors and researchers at Seattle Children’s to perform functional brain mapping that provides detailed anatomy of the brain.
Members of the guild association primarily raise funds for uncompensated care, but for nearly 20 years the association’s Funding Focus program has directed a portion of the money to important research and patient care priorities.
“These dollars are so important because they’re not restricted to specific projects. Scientists and doctors can use them where they believe they’ll make the greatest difference,” says Aileen Kelly, who leads the guild association. “Our members love knowing they’re helping launch new programs that will change the way childhood illnesses are treated and cured.”
The guild association commitment made a big impression when Ramirez began recruiting other researchers to join the CIBR. Many left secure positions at established institutions because they wanted the freedom to work toward the next big thing. It was important for them to know that donors are willing to help – especially these days when federal support for medical research is dwindling.
“Scientists know that access to philanthropy is more vital than ever,” Ramirez says. “Donors aren’t just people who write checks. They are true partners in the research process who often have a personal stake in the outcome.”
“As donors, we want to accelerate critical discoveries. We want the word 'cure' to become a scientific reality.”
That personal connection to people counting on them ups the urgency ante for researchers. “You feel an extra responsibility to make progress because 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’s Research Institute in downtown Seattle.
Jeanne Tweten and Jim Leslie of Seattle are investing their faith and a leadership gift from their family foundation so Ramirez can start a program within CIBR to study impulse control disorders, a group of disorders caused by the brain’s inability to prioritize and control its impulses. The couple’s son, John, has Tourette syndrome (TS).
“People see the tics and think that’s all there is to TS, but it deeply affects a child’s cognition, emotion, memory and behavior,” says Tweten. “They don’t realize how profoundly it impacts the entire family’s ability to function. I remember crying many evenings and wondering how our family was going to make it through,” she recalls.
Seeing how Tourette syndrome (TS) affects the life of their son inspired Jeanne Tweten and Jim Leslie (above) to help Dr. Nino Ramirez launch a program to study brain disorders.
Things are better now for John, but Tourette syndrome – and other impulse control disorders like ADHD, addiction and depression – lacks a cure. Existing medications focus on tamping down impulsive behaviors, but they are often ineffective and can cause severe side effects.
The current thrust of research in this area is to make better medicines to treat the symptoms. Ramirez’s program is turning that approach on its head: Rather than focusing on the effects of impulse control disorders, the team is dedicated to finding and understanding the causes – the first step to clearing a path to effective new treatments and possibly cures.
Tweten and her husband approached Ramirez about starting a program for impulse control disorders because they are confident his approach will succeed. “At CIBR, they combine efforts and share ideas. That’s how cures are found,” Tweten says. “If anybody can do it, Nino can.”
As the program begins to take shape, the couple feels almost like members of the research team. “Nino’s team advances research in ways others thought impossible. As donors, we hope to accelerate these critical discoveries,” says Tweten. “We want the word 'cure' to become a scientific reality.”
Coping with cancer
“Philanthropy gives us the flexibility to identify a patient need and respond immediately,” says cancer specialist Dr. Rebecca Johnson, who launched a program designed to meet the unique needs of teens and young adults with cancer thanks to funding from the guild association.
Many teens and young adults with cancer fall into a gap between cancer programs designed for younger children and those designed for adults. Children’s Adolescent and Young Adult (AYA) Oncology Program is one of the few programs in the country designed to meet the unique needs of cancer patients from age 15 to their late 20s. Like CIBR, AYA was launched with a Funding Focus gift from the guild association.
AYA has used guild funds to add staff, improve facilities, expand support services and study better ways to care for AYA patients. “We’re now known as one of the top AYA programs in the country. That would not have happened without philanthropy,” says Dr. Rebecca Johnson, who leads the program.
Guild funds free Johnson from the time-intensive work of applying for individual grants – which don’t always win approval – every time she wants to add something to the program. “Philanthropy gives us the flexibility to identify a patient need and respond immediately,” she says. “That’s accelerated our growth tremendously.”
Thanks to guild funding, AYA has purchased fitness equipment, begun offering fertility preservation and hired an artist-in-residence to help patients tell their personal story through various creative media like poetry, photography and videos.
“About 20% of our research budget comes from philanthropy, but that 20% has a huge ripple effect.”
Recently released on YouTube, the Good Times and Bald Times video series features AYA patients sharing their cancer experiences. “It’s a great way to provide the peer support this age group needs and wants,” Johnson says, “but you’d have a hard time getting a specific grant to do that.”
Next spring, the AYA unit will move into a dedicated space on the top floor of our Building Hope expansion. Guild money is helping purchase iPads, an Xbox and other items that will improve the day-to-day life for patients in the hospital. “Helping patients feel at home during a long stay in the hospital is an important part of the healing process,” Kelly notes. “Guild members are proud to help meet that need.
Published in Connection magazine, December 2012