2018 Advocacy Award Honorees Push Boundaries to Advance Research and Improve Health

Samantha Swamy

Raising $2 billion a year in research to prevent and treat Alzheimer’s disease is a daunting task but it’s the goal of Senator Susan Collins (R-ME), the chair of the Senate Alzheimer’s Caucus. Under her leadership, $414 million was included in the Senate funding bill for FY18, bringing us closer to that goal.  Senator Collins will be honored for her achievements in medical research at Research!America’s 2018 Advocacy Awards Dinner on March 14 in Washington, D.C. Senator Collins will receive the Edwin C. Whitehead Award for Medical Research Advocacy, which recognizes exemplary leaders in public office who have shown a longstanding commitment to health research advocacy.

Senator Collins is among a distinguished list of honorees  which includes Research!America Chair Emeritus John Edward Porter; Harvard professor, surgeon, and bestselling author Dr. Atul Gawande; Dr. Peter Hotez, dean of the National School of Tropical Medicine at Baylor College of Medicine; Dr. Roger Glass, the director of the NIH’s Fogarty International Institute; Shari and Garen Staglin, founders of One Mind, One Mind Institute and Bring Change2Mind; and the EveryLife Foundation for Rare Diseases. The 2018 honorees for Research!America’s Advocacy Awards Dinner have excelled in areas ranging from neglected tropical diseases to brain health research. Their accomplishments have made a significant impact on everyone from those closest to them to individuals across the globe.

When Shari and Garen Staglin’s son Brandon was diagnosed with schizophrenia, they didn’t receive much clarity about what his symptoms meant. To ensure that future patients with brain disorders and their families receive the answers they needed, Shari and Garen decided to start fundraising for brain disease research. Through their annual Music Festival for Brain Health and other related efforts, they have raised over $280 million for brain disease research. The One Mind Institute that they founded in Los Angeles has been generating groundbreaking research on understanding the physiology behind brain disorders. The Staglins will be honored for their achievements to promote brain health through the Gordon and Llura Gund Leadership Award, which honors those who have made a significant contribution to health research advocacy.

We know that healthcare costs are rising, but what can health professionals do to help bend the cost curve? That’s the question that Dr. Atul Gawande is addressing in his bestselling books, articles for The New Yorker magazine, and the panels on which he serves. At the recent West Health Healthcare Costs Innovation Summit, Dr. Gawande emphasized the need for reducing the number of unnecessary tests that doctors perform on elderly patients. He has also called for a greater level of attention from doctors to a patient’s quality of life and more understanding for the terminally ill. Dr. Gawande will be receiving the Research!America’s Isadore Rosenfeld Award for Impact on Public Opinion for his tireless work to raise awareness to reduce patient suffering and healthcare costs.

There are approximately 7,000 rare diseases in America, and 30 million Americans suffer from one of them. However, 95% of rare diseases don’t have a single FDA-approved treatment or cure. The EveryLife Foundation is trying to change that. On Rare Disease Day, February 28, EveryLife and other partners brought rare disease patients and their families to Washington D.C. to attend the Rare Disease Caucus. At this caucus, plans for legislation like the Rare Disease Advancement, Research, and Education Act were unveiled, thanks to the continuing effort of EveryLife to advocate for those living with rare diseases. The EveryLife Foundation will be recognized for their contributions to rare disease research and advocacy through the Paul G. Rogers Distinguished Organization Advocacy Award.

With the name “neglected tropical diseases” (NTD), one might think that they only affect developing nations. However, Dr. Peter Hotez was surprised to find these diseases in his own backyard – in Houston’s historic Fifth Ward. This led him to the realization that while many countries’ economies are growing and thriving, they are leaving behind a segment of the population that still suffers from NTDs. Now, instead of global health, Dr. Hotez advocates for Blue Marble Health – a term that refers to the paradigm in which NTDs are increasingly found among the poor living in wealthy nations. He wrote his latest book, titled Blue Marble Health, to draw awareness to this fact among researchers and global health professionals as well as students and citizens. His advocacy for bettering the lives of the poor across the world and in our society will be recognized through the Research!America Advocacy Award for Sustained National Leadership.

Dr. Roger Glass has conducted field studies across the globe in countries including India, Bangladesh, Brazil, Russia, and Vietnam. He led teams of researchers who spearheaded global efforts to research and introduce a rotavirus vaccine worldwide, saving the lives of countless people. He continues to be a strong advocate for global health today, writing multiple opinion pieces for the Fogarty Center’s website and overseeing an extensive portfolio of grants and awards that support training of researchers for global health. Dr. Glass will be honored with the Geoffrey Beene Builders of Science Award.

Today, we all recognize how instrumental increasing the National Institutes of Health’s budget is to medical research and job growth across the country. But The Honorable John Edward Porter remembers when it was still a formidable challenge in Congress in the 1990s. As chair of the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies, he spearheaded efforts to boost federal funds to federal health agencies, and was instrumental in doubling the NIH’s budget over the course of five years. John Edward Porter’s leadership in advancing medical and health research will be honored through Research!America’s Legacy Award.

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You can change the image of things to come. But you can’t do it sitting on your hands … The science community should reach out to Congress and build bridges.
The Honorable John E. Porter