Senator Susan Collins (R-ME) says she has witnessed the power of medical research to transform lives. In remarks at Research!America’s Advocacy Awards Dinner, she described how advances in research dramatically improved the quality of life of a young diabetes patient. “There’s no investment that promises greater returns for Americans than our investments in biomedical research,” she said. Sen. Collins received the Edwin C. Whitehead Award for Medical Research Advocacy for her leadership in advancing medical research, particularly Alzheimer’s disease and diabetes research, at the dinner held Wednesday, March 14 in Washington, D.C.
Research!America Chair Emeritus The Honorable John Edward Porter, recipient of the Legacy Award, noted that science is too often ignored by the public and policymakers. “What worries me most today is that we have learned how to make progress with evidence-based decision-making and yet many of our fellow citizens reject this,” he said. The award has been renamed in his honor.
Dr. Peter Hotez, who was honored with the Research!America Advocacy Award for Sustained National Leadership, discussed challenges with creating a sense of urgency about neglected tropical diseases (NTDs). “We now estimate that there are 12 million Americans living in extreme poverty infected with NTDs and this has been one of the hardest advocacy efforts of all - making people care about the poor and disenfranchised right here at home.”
Other honorees included Shari and Garen Staglin, who received the Gordon and Llura Gund Leadership Award for their efforts in brain disorder research advocacy. Dr. Atul Gawande, bestselling author and professor at Harvard Medical School, received the Isadore Rosenfeld Award for Impact on Public Opinion for raising public awareness about the standard of health care. The Paul G. Rogers Distinguished Organization Advocacy Award was presented to The EveryLife Foundation for Rare Diseases. Emil Kakkis, founder and board member of the Foundation, and Max Schill, patient advocate, accepted the award on the Foundation’s behalf. Dr. Roger Glass received the Geoffrey Beene Builders of Science Award for his leadership as director of the Fogarty International Center at the National Institutes of Health.
For videos, photos and a special insert from the 2018 Advocacy Awards Dinner, click here.
Advocating for science funding is essential to maintain our nation’s global leadership in research and development, according to Congresswoman Eddie Bernice Johnson (D-TX-30), Ranking Member of the House Committee on Science, Space and Technology. She was the keynote speaker at Research!America’s 29th Annual Meeting of Members on March 14 in Washington, D.C. “We’re really falling far short of nurturing our own homegrown STEM talent,” she said, adding that minority youth should be encouraged to pursue careers in science, technology, engineering and math. “Every day we see the need to have this talent.”
Nearly one in four U.S. households include someone with migraine, but despite the prevalence of this neurological disease, few effective treatments are available for patients. Research!America will host the webinar, “What are the Barriers in Advancing Migraine Research?,” on Wednesday, April 11, 3:00-4:00 p.m. ET. Experts will discuss opportunities in accelerating the pace of migraine research, clinical research and efforts in the public and private sector to develop new treatments for migraine sufferers. Speakers include Dr. Michael L. Oshinsky, program director, Pain and Migraine, NINDS/NIH; Dr. Jan Lewis Brandes, Nashville Neuroscience Group; and Dr. Robert Shapiro, Department of Neurological Sciences, Larner College of Medicine at the University of Vermont. The webinar is supported in part by Amgen.
Advocacy has proven its worth once again in helping secure increases for federal agencies including the unprecedented $3 billion boost for the National Institutes of Health in the FY18 omnibus bill. House Democratic Leader Nancy Pelosi (D-CA), who joined us at our Advocacy Awards Dinner in March (see coverage elsewhere in this issue), announced the likely NIH increase in her remarks at the event, to the delight of all in the room! Just days later, President Trump signed the legislation and all federal science agencies received a much-needed boost. Yes, advocacy works but a new threat could roll back efforts to advance scientific progress. 
Horizon Pharma focuses primarily on the research, development and commercialization of medicines that treat rare diseases, which are diseases that impact fewer than 200,000 people in the United States. Because so few individuals are affected by a single rare disease, working to better understand the nature of the specific disease as well as developing appropriate biomarkers, diagnostics and treatments is often very challenging and requires a network of academic, government and private physicians and scientists to work together alongside those few patients impacted by the disease. 
On Saturday, April 14, 2018, scientists and science enthusiasts across the globe will gather for the March for Science, the second annual celebration of science and its impact on society. Participants will urge policymakers to enact evidence-based policies that serve all communities and advance scientific knowledge. “Last year the goal was to get people out in support of science,” said Caroline Weinberg, one of the founders of the March for Science and the interim executive director of the organization in a 
Dr. Robert Redfield, a virologist and physician who is well-known for his extensive work in the area of HIV/AIDS, has been appointed the new director of the Centers for Disease Control and Prevention (CDC). In a speech to CDC staff, Dr. Redfield said the agency is “science-based and data-driven, and that's why CDC has the credibility around the world that it has.” 
U.S. Surgeon General Jerome Adams says his vision is for a healthier and more equitable America but we must reframe the way we talk about health to achieve that goal. “I believe with every fiber of my being that every American deserves to live a long and healthy life. Unfortunately, we’re falling short of that goal.”
Research!America Board Chair The Honorable Michael N. Castle called for more bipartisan cooperation among members of Congress in a Delaware State News article about the impact of political partisanship on the legislative process. “The bottom line is we are not making the progress that we should in terms of working out legislation for the betterment of the country.”
In an NPR article about gun violence research, Research!America board member Georges Benjamin, M.D., executive director, American Public Health Association, said that recent budget language will make gun violence research more permissible.
Research!America board member Rush D. Holt, Ph.D., CEO, American Association for the Advancement of Science (AAAS), told The Washington Post that candidates with STEM backgrounds would be beneficial to policymaking.