Research!America Legacy Award Renamed for Former Congressman John Edward Porter
The Honorable John Edward Porter, the recipient of Research!America’s Legacy Award, dedicated his award to National Institutes of Health (NIH) Director Dr. Francis Collins, National Institute of Allergy and Infectious Diseases Director Dr. Anthony Fauci, the institute directors and “the entire NIH family including those who clean the labs and scrub the floors. All of them are essential to the NIH’s vision.” Porter, who was instrumental in doubling the NIH’s budget over a five year period, received the award at Research!America’s Advocacy Awards Dinner on March 14 in Washington, D.C. The Honorable Mike Castle, Research!America Board Chair, announced that the award is named in Porter’s honor.
In his acceptance speech, Porter 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 and also want to undo much of the safety net that helps alleviate poverty.” He encouraged advocates to make their voices heard, adding “we are all privileged citizens in this great experiment in democracy. We can only serve it by being part of it.”
“There’s no investment that promises greater returns for Americans than our investments in biomedical research,” Senator Susan Collins (R-ME) said during her acceptance of the Edwin C. Whitehead Award for Medical Research Advocacy. “I get so excited when I see the progress that we’re making with the pattern of robust funding of the NIH.” Senator Collins has been a strong supporter of medical research as the founder and co-chair of the Senate Diabetes Caucus and the co-author of a bill to increase funding for Alzheimer’s research. Speaking directly to the scientists in the room, she said, “I’m proud to stand with you. Your work is transformative.”
Castle delivered the Chair address and urged advocates to talk about the value of research and innovation with elected officials. “From the strong leadership of John Edward Porter to champions like Senator Susan Collins and all our honorees tonight, I am confident our collective energy and unified voices will convince decision-makers to support robust funding and policies that allow our nation’s research enterprise to thrive,” he said.
Dr. William Hait, Global Head of Johnson & Johnson External Innovation, praised the honorees who “through their dedication, passion, and resolve have focused the nation’s attention on the importance of science and the application of scientific discoveries to all humanity.” He added that “living a life free from disease” is possible with a health care system more attuned to eliminating disease through prevention, interception, and cure.”
Emil Kakkis, founder and board member of the EveryLife Foundation for Rare Diseases, accepted the Paul G. Rogers Distinguished Organization Advocacy Award on the foundation’s behalf. “We are such a small foundation but we’re trying to do big things in the rare disease community,” he said. “In the past few years, the foundation has continued to grow through the Rare Disease Legislative Advocates group.”
Rare disease patient advocate Max Schill, age 9, delivered a heartfelt speech about his advocacy for medical research, describing his visits to Capitol Hill to meet with members of Congress. “Research costs billions of dollars. I don’t have that in my piggybank,” he said, urging policymakers to fund research for the rare diseases that affect 30 million Americans. “Without EveryLife I would have never learned that I can’t sit around waiting for treatments and cures. I have to fight for them.”
Dr. Peter Hotez was honored with the Research!America Advocacy Award for Sustained National Leadership for his commitment to treating neglected tropical diseases (NTDs) that exist in developing nations as well as in parts of the United States. “One of the things we did when we came to Texas was to take that global health lens and turn it inwards on the southern part of the United States,” he said. “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.”
Shari and Garen Staglin received the Gordon and Llura Gund Leadership Award for their advocacy efforts in raising funds and awareness for brain disorder research. Shari Staglin likened the quest to understand brain disorders to the journey of putting a man on the moon within ten years. “Consider this as the new galaxy of the neurons and the synapses, and to us, you scientists are our astronauts,” she said. Garen Staglin emphasized the need for more mental health funding, saying that “mental illness is the biggest unmet need in America.” He called on legislators and research advocates to “galvanize the will of the American people to stomp out these illnesses.” In describing the Staglins’ contributions to research during the award presentation, House Democratic Leader Nancy Pelosi (D-CA) mentioned that “it is possible that [Congress] will be adding $3 billion to the NIH budget” in FY18. She elaborated on the need for robust funding for biomedical research, saying that “where there is scientific opportunity, we have a moral responsibility to fund it.”
Dr. Atul Gawande, the recipient of the Isadore Rosenfeld Award for Impact on Public Opinion for his bestselling books and articles on raising the standard of health care, spoke about how far the research community has come and about the areas where there is still work to be done. “In 1900, the average American lived only into our 40s,” he said. "Thanks to a century of incredible discovery, we now get to live, with access to treatments and medication, into our 80s. That happened because of the kind of research that you are advocating for." Dr. Gawande accepted the award in a videotaped presentation.
Dr. Roger Glass, director of the Fogarty International Center at the NIH, received the Geoffrey Beene Builders of Science Award for his research and advocacy efforts in global health both in the United States and around the world. “The NIH makes discoveries that change our lives and improve health everywhere,” he said, praising his colleagues. He also pointed out that the partnerships between domestic and international research institutes is vital to the advancement of medical research. “We have all advanced science together, building these incredible, enduring collaborations.”
To see a list of the Honorary Chairs, click here.
For more information about past Advocacy Awards, click here.