Each month, Research!America features a member in its award-winning newsletter The Research Advocate.
March 2008: Kidney Cancer Association
February 2008: The Allen Brain Institute
January 2008: The Society for Neuroscience
December 2007: The CFIDS Association of America
Duke Medicine
Duke
Medicine is a research intensive academic health center whose mission is to
transform medicine through innovative research and care delivery. Duke is
committed to socially relevant education, translational research, compassionate
patient care and global healthcare solutions, and its health system, medical
and nursing schools are ranked among the very best in the nation.
Duke Medicine is committed to an "innovation continuum." The institution invests in basic discovery science, committing resources for clinical and translational research through the new Duke Translational Medicine Institute. Duke is moving toward personalized medicine and engaging in broad global research activities through its Global Health Institute and partnerships with foreign universities and governments, such as that to establish the Duke-National University of Singapore Graduate Medical School.
"One successful strategy in advancing research is enhancing public awareness through partnerships, with organizations such as Research!America and the Association of American Medical Colleges, and through our government and media relations programs," said Victor J. Dzau, MD, chancellor for health affairs. "Recently we joined six other academic medical centers in Washington to make known the impact of the flat National Institutes of Health budget on our talented young scientists. We encourage our scientists and students to speak to the public. The challenge always is competition with other political and public priorities."
The medical center's target audiences include its own scientists and students, donors, the general public, and government and funding agencies.
"Many of Duke's leaders meet with influential audiences, but our media, government relations and development teams have carried much of the responsibility for communicating our research news and needs," Dzau said. "New research-focused Web sites and publications are in the works to provide new options for reaching our audiences."
Duke is committed to addressing health disparities domestically and globally.
"We have public and private partners for these activities through the health system and the Duke Global Health Institute, which is developing research and training opportunities for students and trainees," Dzau said.
NIH funding remains the largest source of support for the medical center. Although the medical school ranked No. 2 in NIH dollars received in FY06, Duke scientists are feeling the effects of a constrained NIH budget.
"We are concerned by the likely long-term negative impact on today's young scientists, and, like other institutions, are turning more to private support including philanthropy," Dzau said. "An increase in major private foundations and the shift of public support toward infectious disease and translational research has helped some of our scientists, but many are still under pressure."
Duke Medicine has been a Research!America member since 1989. Dzau said Research!America membership materials are important communication tools for him and his faculty.
"We focus on education, research, clinical care, and service to our community, and we rely on Research!America to provide a trusted and unified voice for science, which it does admirably," he said.
Visit www.dukemedicine.org.
Member Spotlight: Kidney Cancer Association
Awareness of kidney cancer is a priority for the Kidney Cancer Association. It is one of the more rare types of cancer, affecting a small population.
"We want people to be aware of kidney cancer and know the early symptoms to further reduce its reach," said Bill Bro, the association's CEO. "For patients with kidney cancer, we really try to make sure they're as educated as they can be and know about available therapies.
"Research and advocacy are also important components in the association's work. Membership in Research!America augments those components."
Not only does the association directly fund research into kidney cancer, in partnership primarily with the American Society of Clinical Oncology and the American Urological Association, but it also empowers its membership with advocacy tools.
"When patients receive a diagnosis such as kidney cancer, they can be overwhelmed by the lack of control they seem to have," Bro said. "But being an advocate is a way they can have a positive impact."
Not only has the association been a Research!America member since 1996, but it has also been a strong partner in our recent Your Congress-Your Health and Your Candidates-Your Health: Presidential Primaries 2008 initiatives.
"These have been great collaborations for us," Bro said. "The sites allow our members to know where their candidates and leaders stand, and to evaluate their positions."
The association reaches out to its more than 45,000 members primarily through e-communications. In addition to keeping its members informed of the latest research and advocacy opportunities, the association promotes clinical trials, giving patients one more way to address their cancer.
"Translational research, or getting the research findings to the patients' health care, is of tremendous importance to us," Bro said. "Clinical trials are an important part of that process."
The association's work does not focus exclusively on kidney cancer.
"Cancer research in general is important, too," Bro said. "You never know where a cure or treatment for kidney cancer might pop up."
A medical advisory board, made up of the top physicians working with kidney cancer patients, allows the association to help its members with medical referrals.
The association actively supports increasing public and private funding for all research.
"The more money you put into research, the more cures and treatments you can get out," Bro said. "That's the bottom line, and it's true not just for kidney cancer."
For more information, visit www.kidneycancer.org.
March is National Kidney Month. For more information, visit http://nkdep.nih.gov/kidneymonth/.
Member Spotlight: The Allen Institute for Brain Research
The Allen Institute for Brain Science is an independent, 501(c)(3) non-profit medical research organization dedicated to performing innovative basic research on the brain and distributing its discoveries to researchers around the world.
Philanthropist Paul G. Allen, who cofounded Microsoft with Bill Gates in 1976 (before leaving the company in 1983), was diagnosed with Hodgkin's disease in the early 1980s. With Jody Patton, he founded the Allen Institute for Brain Science in 2001 as a way to further the fields of neuroscience and genomics. The Allen Brain Atlas was its first project and got under way just after the Human Genome Project was completed.
The atlas is an open access, Web-based, 3-D map of gene expression in the adult male mouse brain detailing more than 20,000 genes at the cellular level. It is a comprehensive resource for researchers that reveals where each gene is expressed, or "turned on."
The institute's infrastructure took a year to build, said Elaine Jones, the institute's chief operating officer. In its 35,000 square feet lab, more than 100 scientists, including 30 PhDs, work on compiling and analyzing the data. The microscope room is a unique feature: a dozen scopes operate automatically, analyzing slides around the clock.
"Our data saves researchers the time of doing it on their own," Jones said. "Researchers could spend their entire career on one or two genes, but we have that data on all genes and in context. Researchers can then access the gene they're interested in, along with all its neighbors."
This type of data is critical to enhancing research surrounding human neurological diseases and disorders, including developing drug targets. Epilepsy, autism, Parkinson's and Alzheimer's are just a few diseases potentially helped by the institute's work.
The institute also makes available mathematical tools for analyzing and putting the data to use. Everything is online and free for researchers around the world.
"We announced the completion and key findings of the brain atlas in September 2006, in Washington, DC," Jones said. "There, many leaders from advocacy groups were able to attend. The reality is that advocacy groups' constituencies are why you do research."
The institute is a private- public partnership, although its funding is primarily from private philanthropists. Funding for the National Institutes of Health is still a priority for the institute, Jones said.
"We really believe that the federal government is the leader in health science research," Jones said. "And in any industry, you want to work with the leaders."
She said membership in Research!America helps make working with the government more efficient. "Knowing Research!America is advocating for us in DC, and watching what happens, is fabulous," she said. "When a bill comes up that impacts NIH, thanks to Research!America's advocacy communications, we‘re able to be on the phone calling our senators and representatives."
The institute soon will announce its next big projects. For more information see www.alleninstitute.org. To access the brain atlas, visit www.brain-map.org.
Member Spotlight: The Society for Neuroscience
Founded in 1969, the Society for Neuroscience is the world's largest professional organization representing scientists and physicians dedicated to understanding the brain, spinal cord and peripheral nervous system. Today, the Society has more than 38,000 members worldwide and continues to grow.
The Society for Neuroscience works to increase basic science literacy in America, specifically from the perspective of basic biology of the brain and how research will lead to clinical innovations. "The American public is not as knowledgeable about important scientific principles and concepts as they need to be in order to make informed decisions about science policy," said John H. Morrison, PhD, chair of the Society for Neuroscience's government and public affairs committee. "Neurological disorders are one of the most costly in terms of human suffering and the economy, but people know little about the brain and how it functions and how things go wrong.
"We encourage our members to advocate for public funding for science and to educate the public about neuroscience and neurologic and psychological disorders, especially about the role of research."
Flat or decreased NIH funding has put incredible pressure on the research community, Morrison said. "It has an immediate effect because it decreases the money available for research right now. Possibly even more importantly, it's impossible to sustain a research program over the course of five to 10 years because of constant funding lapses."
The Society encourages its members to make the case for increased research funding to Congress and is a primary partner with the Dana Alliance for Brain Initiatives in Brain Awareness Week, which is March 10-16 this year.
Morrison also stressed that the Society always keeps in mind all three elements of research: a very strong basic science foundation, the willingness and capacity to translate research and clinical innovation.
"We need to impress upon the American people and Congress that we must have a strong foundation in basic science to cure these debilitating diseases," Morrison said. "The basic science foundation has to come from government funding. When you cut funding, you cut this foundation, and it will have devastating consequences when trying to cure disease."
A member of Research!America since 1989, the Society for Neuroscience also is a strong partner in our voter education initiatives including Your Congress-Your Health and Your Candidates-Your Health.
Partnering with Research!America "has enabled us to increase our impact on Congress and on the funding of science," Morrison said.
A key way that the Society advances medical and health research is through its annual meeting each fall when more than 30,000 scientists attend and present the newest findings. The 2008 annual meeting will be November 15-19 in Washington, DC.
The Society also disseminates the latest research findings through its many publications, including The Journal of Neuroscience, its peer-reviewed, weekly journal. For more information, visit www.sfn.org.
Member Spotlight: The CFIDS Association of America
The CFIDS Association of America is the largest non-government supporter of research into the causes of and treatments for CFS.
Through its work that includes an ever-expanding worldwide network of basic science researchers, clinicians on the front line of patient care, and organizations and federal agencies with CFS programs, the association is helping to propel CFS research forward at an unprecedented pace.
"Federal funding-and the credibility for CFS that federal support conveys-is absolutely essential to making progress in diagnostics and therapeutics for this complex illness that affects at least one million Americans," said K. Kimberly McCleary, president and CEO. "Private sources of support are also vital to progress, and we work to attract greater investment from all sectors."
The association's current research model helps investigators prepare to compete in the often challenging federal funding environment.
"To date, we've supported $4.8 million in research, most of it directed to pilot studies that have helped investigators develop and refine hypotheses and collect preliminary data," McCleary said.
With a strong presence on Capitol Hill, the association has developed a reputation for being a vigilant watchdog regarding the use of federal funds for CFS. McCleary and her staff closely monitor all phases of the research process, from study design to implementation to data publication.
"Although CFS is more widely understood to be a valid medical condition than it was even a decade ago, we constantly work to replace outdated perceptions with newer information about its severity and complexity," she said.
In partnership with Research!America, the association recently produced a CFS fact sheet as part of our Investment in Research Saves Lives and Money series.
"Our partnership with Research!America provides for a new level of visibility for CFS-particularly with academic and policy audiences-than we have been able to achieve on our own," McCleary said.
"Research!America is on the front lines of making research a higher visibility issue for all Americans, lawmakers and policymakers," she added. "Expanding our nation's support for the total research ‘pie‘ is crucial, otherwise, all of our slices will continue to shrink."
The association also reaches out to the public-particularly those whose lives have been directly affected by CFS-and to health care professionals. Such outreach has grown over the past year in conjunction with the CDC-supported CFS public awareness campaign.
Campaign strategies include public service announcements and a traveling photo exhibit, "The Faces of Chronic Fatigue Syndrome." The exhibit has been in 22 public venues nationwide, with more planned for 2008. For more, see www.cfids.org.