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.”
Dr. Nino Ramirez
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.”
Jeanne Tweten
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 Building 1 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. RebeccaJohnson, 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.”
Dr. Jim Hendricks
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