Headlines these days related to research funding are grim: “Seattle researchers fear federal cuts will costs lives and jobs” and “Show me the money: Is grant writing taking over science?” are two recent stories that ran in the Puget Sound Business Journal and The Guardian, respectively.
The federal government announced in May that the National Institutes of Health 2013 budget will drop by five percent, or $1.71 billion, to $29.15 billion, compared to 2012. The cuts are part of the effort to balance the budget and, based on what our researchers say, are part of the “new normal” moving forward.
But there’s a bright spot here at Seattle Children’s: Philanthropy for research is increasing, and it’s making a difference.
Volunteer fundraisers in the Guild Association
Seattle Children’s has the nation’s biggest volunteer fundraising arm, with nearly 500 groups under the Guild Association. Of that number, 23 guilds are actively raising money for research. Ten years ago, there was perhaps one such volunteer group, said Aileen Kelly, executive director of the Guild Association.
In fiscal year 2012, combined efforts of all guilds raised $1.9 million for research programs.
The variety and names of these groups run the gamut – the Butterfly Guild funds research for children diagnosed with Shwachman-Diamond Syndrome. Have you seen the hand-tied, brightly colored elastic ponytail holders and headbands for sale around town? That’s the handiwork of the Pink Bandanas Junior Guild, which raises money for brain tumor research. The Tiny Footprints Guild supports prematurity and stillbirth research.
Grieving a loss, creating a movement to fight cancer
Ben Towne Foundation, an independent nonprofit, also supports Seattle Children’s Research Institute through the Ben Towne Center for Childhood Cancer Research. Ben was only three years old when he passed away in December 2008 from neuroblastoma, a rare pediatric cancer. His parents, Jeff and Carin, said they felt like they were uniquely equipped to do something. “We started Ben Towne Foundation to help accelerate the pace of pediatric cancer research towards cures,” said Carin.
Formed in 2010, the foundation gave a $5 million gift in January 2012 to accelerate the work of Michael Jensen, MD, director of the Ben Towne Center for Childhood Cancer Research, and his team, who are creating new cancer treatments that reprogram a child’s immune system to attack and kill cancer cells.
At any given time, Ben Towne Foundation or one of its chapters is raising funds through a concert, movie screening or a partnership with organizations such as Callie’s Coffee, glassybaby and Seattle-Eastside Bar Method.
Money raised by Ben Towne Foundation is now covering 80 percent of research staff salaries and research materials for clinical trial development, said Jensen.”This grassroots organization is a model for the rest of the country,” he said. “It’s the West Coast’s answer to The Jimmy Fund, which supports adult and pediatric cancer care and research at Boston’s Dana-Farber Cancer Institute.”
Though it’s only been around three years, the Research Champions program recently announced its 2012 membership had increased 20 percent over 2011 figures, with a total now of 768 members. Research Champions give $1,000 or more in one year as an individual or $2,500 or more as an organization. In 2012, these donors contributed $19.1 million for research at Seattle Children’s.
Research Champions are invited to special presentations and have a chance to ask scientists questions about their work. A recent “Research in Action” featured women scientists who talked about studies on environmental toxins, brain tumor research and emergency services.
Making heart surgery obsolete
And sometimes a champion on an individual level makes a big difference. Mark Majesky, PhD, is unraveling how stem cells transform into specialized cells that build the body’s cardiovascular system. By understanding how heart cells, vessel wall cells and muscle cells first form, Majesky is moving closer to creating therapies that repair childhood disorders without surgery.
The core of Majesky’s work is an initiative to develop stem cell treatments for heart problems. One in 100 children is born with a heart defect, and standard treatment can include open-heart surgery and sometimes even a heart transplant.
His work is taking major steps forward thanks to Loie Robinson, a Seattle Children’s donor who was so inspired by Majesky’s work that she contributed $2 million to his research. “Mark’s work has amazing potential to transform children’s lives, and I jumped at the opportunity to help speed up his progress,” Robinson said.
Majesky said Robinson’s generous gift has helped him at a time when funding from the National Institutes of Health is getting harder to secure. “We don’t have sufficient preliminary data in some cases to get a NIH grant,” he said. “But Loie’s gifts allow us to move this work forward in another way. There isn’t a funding agency that says they want to fund ‘risky’ ideas these days, and there are real needs at the hospital for the type of work that we’re doing.”
Robinson’s donations have supported Majesky and his team’s work for the last three years.