The Research Advocate, our award-winning membership newsletter, provides the latest news and information on medical, health and scientific research advocacy, as well as reports from Research!America and member organizations. Regular features include policy articles, profiles of Research!America members, media coverage of research advocacy issues, a column by Research!America President and CEO Mary Woolley, and important updates to help our members in their own efforts to make research to improve health a higher national priority. For questions or comments contact Jennifer Santisi,

From Research!America

Experts and Agency Heads to Discuss Future of Research

Research!America’s 2016 National Health Research Forum will tackle relevant and cutting-edge issues on medical research and innovation Thursday, September 8, 11:30 a.m. – 3:00 p.m. ET, at the Newseum in Washington, D.C.  As policymakers explore ways to modernize our research ecosystem to benefit patients and bring researchers together to work toward national initiatives, experts representing various sectors of the research community will discuss the future of medical progress.

The first panel, moderated by Nsikan Akpan, digital science producer for PBS NewsHour, will discuss national initiatives, such as the BRAIN initiative and the cancer moonshot, looking at the progress and  promise of such programs, and current health challenges including the Zika virus. Panelists will include France A. Córdova, Ph.D., director, National Science Foundation; Donna R. Cryer, JD, president and CEO, Global Liver Institute; John W. Danaher, M.D., MBA, president, Elsevier Education, Elsevier; Anthony S. Fauci, M.D., director, National Institute of Allergy and Infectious Diseases; Albert A. Lauritano, M.S., CLP, director, strategic technology partnerships, BD; and Keith R. Yamamoto, Ph.D., vice chancellor for research, executive vice dean of the school of medicine, and professor of cellular and molecular pharmacology, University of California, San Francisco.

Natalie Azar, M.D., medical contributor for NBC news, will moderate the second panel, which will look at the importance of prevention research in forestalling and addressing public health threats, such as antibiotic resistance and the opioid epidemic. Panelists are Hortensia Amaro, Ph.D., associate vice provost for community research initiatives and dean's professor of social work and preventive medicine, University of Southern California; Andrew B. Bindman, M.D., director, Agency for Healthcare Research and Quality; Thomas R. Frieden, M.D., MPH, director, Centers for Disease Control and Prevention; William N. Hait, M.D., Ph.D., global head, Janssen Research & Development, LLC, one of the Janssen Pharmaceutical Companies of Johnson & Johnson; Joe V. Selby, M.D., MPH, executive director, Patient-Centered Outcomes Research Institute; and Stephen D. Silberstein, M.D., FAHS, FACP, professor of neurology and director of the Jefferson Headache Center, Thomas Jefferson University.

Geneva Overholser, a senior fellow and consultant at the Democracy Fund, will moderate the third panel and explore the role of the Food and Drug Administration in delivering on the promise of regenerative medicine, precision medicine and other scientific breakthroughs. Panelists include Robert M. Califf, M.D., commissioner, the Food and Drug Administration; Emil Kakkis, M.D., Ph.D., president and founder, EveryLife Foundation for Rare Diseases; and The Honorable Kweisi Mfume, former U.S. Representative, 1987-1996; Sudip S. Parikh, Ph.D., senior vice president and managing director, DIA Global; and Jean-Christophe Tellier, M.D., CEO, UCB.

Janssen Pharmaceutical Companies of Johnson & Johnson is the lead sponsor of the event. Panel sponsors include AdvaMed, Amgen, BD, Elsevier and PCORI. For more information and a full list of sponsors, visit

Cures and Public Health at Stake in September

As members of Congress return to D.C. this month, they face a looming deadline: if no action is taken to complete the fiscal year 2017 (FY17) budget process or pass a continuing resolution (CR) that temporarily extends FY16 funding levels, a government shutdown will take effect on October 1, 2016. While significant progress has been made on the 12 appropriations bills that comprise the federal budget, it is unlikely Congress can pass these bills in September. The most likely scenario is a CR. Some members of Congress are even pushing for a long-term CR that flat funds the federal government for six or even 12 months, preventing any increase in funding for strategic priorities like medical, health and other scientific research. Research!America recently sent a letter to congressional leadership urging them to avoid a long-term CR.

September will also be a critical month in the effort to pass Cures legislation, which aims to refine the policy climate and leverage targeted resources to accelerate medical progress. While the House passed their version of this legislation, the 21st Century Cures Act (HR 6), in July 2015 and the Senate Health, Education, Labor, and Pensions (HELP) Committee passed nearly 20 separate bills related to Cures, these bills have not yet been advanced for full Senate consideration. Pay-fors to offset the costs of a potential one-time research fund, similar to what was included in the House version, remain a point of contention. During the recess, the Chairs of the Congressional Committees of jurisdiction both expressed optimism about the legislation. House Energy and Commerce Committee Chairman and HR 6 sponsor Fred Upton (R-MI-06) penned an article indicating his support for getting a final deal done in September, and Senate HELP Committee Chairman Lamar Alexander (R-TN) expressed optimism in an interview for getting the legislation completed before the end of the year.

As local infections and travel-related cases of Zika virus are reported in the continental US, Americans are facing a public health emergency. After Congress adjourned for summer recess without reaching agreement on Zika emergency funding legislation, Health and Human Services Secretary Sylvia Burwell announced that existing funding to address domestic Zika efforts will be exhausted by the end of September. During the recess, House and Senate leaders were reportedly working with the administration to reach a compromise that can be considered by legislators this month.

There is growing interest in the idea of a permanent fund to allow rapid response to public health emergencies. Versions of this idea were put forward in a House bill introduced by Rep. Rosa DeLauro (D-CT-03) and included in the House FY17 Labor-H Appropriations bill. The House Labor-H appropriations legislation, which was approved by the full House Appropriations Committee but not advanced for full House consideration, establishes a reserve fund within the CDC to allow for quick responses to infectious diseases.


#CuresNOW Advocacy

Throughout the month of August, Research!America engaged in the advocacy initiative, Save Lives. Support Cures., aimed at encouraging the Senate to pass Cures legislation in September. The measure would help speed the development of new treatments and medical devices for patients. Through a number of channels including social media, blog posts, letters to Congress and other actions, Research!America, members and advocates showed strong support for finding cures and modernizing our nation’s research and innovation ecosystem.

Each week featured a different theme of the research continuum—discovery, development and delivery. Guest blog posts from Representative Fred Upton (R-MI-06), the Society for Neuroscience, the Hydrocephalus Association, Purdue University and the Infectious Diseases Society of America explored each week’s theme, from basic research to drug discovery to highlighting patient stories.

A major part of the month long initiative was to make sure advocates connected with their representatives in Congress to share their personal stories and explain why it’s important to take action on Cures legislation. More than 600 letters were sent through Research!America’s advocacy platform to Congress. Thousands of patients and advocates joined in on social media, voicing their support using the hashtag #CuresNOW.  

Hill Briefing on Oral Health in Older Adults

Research has shown that oral health may be linked to other serious health issues, such as diabetes, stroke, heart disease and lung disease. Nearly a quarter of U.S. adults age 65 and older have not seen a dentist in the past five years. Research!America and Colgate-Palmolive will host the briefing, “Oral Health in an Aging Nation: An Unmet Public Health Challenge,” on October 4 to discuss some of the most pressing issues facing seniors today.

A diverse panel of experts will address such topics as the critical importance of good oral health in older Americans, the connection between oral health and chronic diseases, the need for more oral health research and much more. Confirmed panelists include: Judith Jones, DDS, MPH, DScD, director, Center for Clinical Research Professor, Department of Health Policy & Health Services Research and Department of General Dentistry, Boston University Henry M. Goldman School of Dental Medicine; Marko Vujicic, Ph.D., chief economist & vice president, Health Policy Institute, American Dental Association; Michael C. Alfano, DMD, Ph.D., president, Santa Fe Group; professor, dean and executive vice president emeritus, New York University; Beth Truett, president, Oral Health America; and Fotinos S. Panagakos, DMD, Ph.D., global director, scientific affairs, Colgate-Palmolive Co. 

The Microbiome Initiative Webinar: A Closer Look

Stefano Bertuzzi, Ph.D., MPH, executive director and CEO of the American Society for Microbiology, will join Research!America in a webinar for member organizations to discuss the National Microbiome Initiative on Friday, September 16 at 1 p.m. ET. The National Microbiome Initiative brings together public, private and not-for-profit organizations to advance our understanding of microbiomes, the communities of microorganisms throughout our environment. Through interdisciplinary research, the development of innovative technologies and a robust workforce, the initiative seeks to collect novel information and deploy new knowledge to improve the lives of Americans across the nation. Dr. Bertuzzi will provide an overview of the initiative, and insight about the implications and opportunities that arise from this massive national undertaking. To register, visit

Sudip S. Parikh Joins DIA Global

Sudip S. Parikh, Ph.D.Research!America board member Sudip S. Parikh, Ph.D., has joined DIA Global as Senior Vice President and Managing Director. Previously, Dr. Parikh served as Vice President and General Manager of Health & Consumer Solutions at Battelle. At Battelle, he led multidisciplinary teams of scientific, technical, and business development professionals who performed research and development activities supported by a wide range of government and commercial clients. Dr. Parikh was also Vice President of AgriFood and led Battelle’s global AgriFood business. Prior to Battelle, Dr. Parikh served nine years as Science Advisor & Professional Staff to the Senate Appropriations Committee. 

Help Fight Suicide

Robert Gebbia, CEO, AFSPSuicide deaths in the U.S. exceed those from homicide, war, and natural disasters combined.  Today, suicide is one of the 10 leading causes of death – with more than 43,000 Americans dying each year.

To address this epidemic, the American Foundation for Suicide Prevention (AFSP) has launched Project 2025, an initiative aimed at the organization’s bold goal of reducing the annual suicide rate 20 percent by 2025. AFSP is taking the lead, and in collaboration with leaders from across industry sectors, will work to implement the most effective programs, policies and interventions that will save the most lives in the shortest amount of time. 

During National Suicide Prevention Week (September 5-11), AFSP encourages everyone to get involved to work toward reducing the rate 20 percent over the next 10 years. By speaking up about suicide prevention, advocates can help elevate the conversation about mental health and truly make a difference.

“Research America and AFSP share a common ideology: that through research, we can make the world a better place. It is my great hope that we can raise our voices together and help save lives,” said Robert Gebbia, CEO of AFSP.

As the largest private funder of suicide prevention research, AFSP sees research as critical to our mission to save lives and bring hope to those affected by suicide. Each year, AFSP funds neurobiological, psychosocial, and genetic research, as well as studies to develop treatments, and community programs to find the best ways to understand and prevent suicide. AFPS does this through money raised by volunteers at events like Out of the Darkness Walks, which take place in communities across the country, bringing together those who have been personally affected by suicide. Volunteers and chapters in every state are the heart of what the foundation does.

For more information, click here

Sigma Xi Launches Research Communications Initiative

Researchers seeking to enhance the impact of their work by sharing it in creative ways with various audiences now have more options available. Sigma Xi, the scientific research society, has launched the Research Communications Initiative (RCI), a program to help researchers and institutions effectively tell the general public, administrators and others about their work. RCI builds on the society’s mission to enhance the health of the research enterprise, foster integrity in science and engineering, and promote the public’s understanding of science.

Through the program, Sigma Xi will help its RCI partners develop a strategy for sharing their research and connect them with leading communication professionals who will develop content, including feature-length articles, videos, infographics, animations, podcasts, social media campaigns, and more. The society will provide both digital and print publishing platforms so that partners may reach new audiences by the thousands and receive a data-driven evaluation of the success of their communications. RCI partners will also have the option of publishing their content within a special section of Sigma Xi’s award-winning magazine, American Scientist, as well as on the Society's other digital platforms. For more information, click here

Engaging Students in STEM Classes

Many high school students in the U.S. are curious about science and view it as a possible career option, according to a recent survey. A majority of students (81%) say they are interested in science and biology (73%). Among those partial to careers in biology,, teachers (85%) and classes (86%) rank high along with their parents or guardians (87%) as the biggest influences on their career decisions.  The survey, which focused on understanding   what motivates students to study science, technology, engineering and math (STEM), is highlighted in the report, “Students on STEM: More Hands-on, Real-World Experiences,” published by the Amgen Foundation and Change the Equation.

The survey shows that students want additional opportunities that will inspire them to explore careers in scientific fields, and teachers are uniquely positioned to stimulate students’ interest in STEM. Respondents overwhelmingly say science is interesting and relevant, but when asked about science classes, they didn’t respond with as much enthusiasm. The report suggests ways to overcome challenges in the classroom, including improving teacher resources and professional development, and facilitating more work-based learning in science—from career fairs to internships in local labs. For more information, click here.   

Research!America has Available Office Space

Research!America’s new office, located in the Crystal City section of Arlington, Virginia has immediate availability of office space to sublease for a member organization seeking a presence in the Washington, D.C. area. Our office is three miles from downtown Washington and one Metro stop from Reagan National Airport. Available space of approx. 700 sq. ft. includes an executive office, two private offices (all fully furnished) as well as up to two work stations. Included in the sublease is access to all office amenities, including large and small conference rooms, direct dial telephone services, fiber optic internet service and access to office machines. The Crystal City Metro subway station is located within the building complex or parking can be arranged. Favorable inclusive sublease rates with flexibility of terms are available. Please contact EVP Mike Coburn ( for more information.

Action Alert

Tell Congress: Research Can’t Afford “Flat” Funding

Congress has not yet finished its work on the upcoming fiscal year (FY) 2017 funding. Passing an appropriations package in an election year is a difficult task, one that has not successfully been met in recent presidential election cycles. This makes the possibility of a continuing resolution (CR), which extends current FY16 funding levels and effectively “flat” funds research, significantly more likely. Some members of Congress are even pushing for a long-term CR, which would not allow for a continued, sustained commitment to medical innovation. Take action now, click here

Special Thanks to Our Supporters and Research!America Alliance Members


2016 National Health Research Forum

Bristol-Myers Squibb


Georgia Bio Innovation Summit and Survey

Georgia Research Alliance

Science Policy Internship Program

Burroughs Wellcome Fund

Visit for ways to support Research!America.


New Member

Alzheimer’s Drug Discovery Foundation

Renewing Members


Academy of Radiology Research/Coalition for Imaging and Bioengineering Research

American College of Medical Genetics and Genomics

American Heart Association

American Society of Clinical Oncology

Arizona State University College of Health Solutions

Arizona State University College of Nursing & Health Innovation

Association of American Cancer Institutes

Association of American Physicians

Association of American Veterinary Medical Colleges

Association of Medical and Graduate Departments of Biochemistry

Carnegie Institution for Science

Children’s Research Institute at Children’s National Medical Center

City of Hope National Medical Center

Cleveland Clinic Lerner Research Institute

Damon Runyon Cancer Research Foundation

Food and Drug Law Institute

The Forsyth Institute

Friedreich’s Ataxia Research Alliance

The George Washington University

H. Lee Moffitt Cancer Center & Research Institute

Harvard Medical School

HudsonAlpha Institute for Biotechnology

Infectious Diseases Society of America

Institute for Systems Biology

The Johns Hopkins University Bloomberg School of Public Health

Keck School of Medicine of the University of Southern California

Lung Cancer Alliance

Medical Device Manufacturers Association

Multiple Myeloma Research Foundation

National Alliance for Eye and Vision Research

National Alliance for Hispanic Health

National Health Council

National Organization for Rare Disorders

Northeast Ohio Medical University College of Pharmacy

The Ohio State University

Ostrow School of Dentistry of USC

Parent Project Muscular Dystrophy

Purdue Pharma L.P.

Regenerative Medicine Foundation

Rice University

The Salk Institute for Biological Studies

Sigma Xi, The Scientific Research Society

Solve ME/CFS Initiative

Tuberous Sclerosis Alliance

Tufts University

University of California, San Francisco

University of Colorado Anschutz Medical Campus

University of Kansas Medical Center School of Nursing

University of Nebraska Medical Center

University of Nebraska Medical Center College of Dentistry

University of Wisconsin School of Medicine and Public Health

Whitehead Institute for Biomedical Research

Yale University School of Medicine

Not yet a member? Join Research!America today at

Regular Features

President's Letter

Mary Woolley, President & CEOWith only a handful of congressional primaries remaining, ballots are nearly all set for November 8. What isn’t set is the position of the candidates regarding the priority they place on driving medical progress by putting research and innovation to work. In fact, very few candidates have shared their positions with voters. And unless you and I and everyone we can reach out to in the next two months demand it, that is unlikely to change. If you need motivation to take action, consider this simple fact: candidates who are elected will become champions of the positions they espoused while running. If they don’t talk about research and innovation when running, they won’t talk about it – and possibly will vote against it – when they take office. A great deal is at stake. It’s time to work on our collective future as stakeholders in achieving better health by acting now to make research for health a priority in the next administration and the next Congress. See elsewhere in this newsletter for tips on how you can make a difference.  

The current Congress should be on your radar screen, as well. They have only a few days in session this month to finally take action to combat Zika, finally send 21st Century Cures across the finish line, and enact a short rather than long-term continuing resolution (CR) to keep the government funded. Having to once again pass a CR is itself a statement of frustrating congressional gridlock but since it is inevitable, let’s make the best of it!  For details on all of these, again, see elsewhere in this newsletter.  

I look forward to seeing you at the 2016 National Health Research Forum on September 8. The speakers and panelists are extraordinary. Send us your comments and recommendations based on the conversations.  

Member Spotlight: Barth Syndrome Foundation

Founded: 2000

Located: Larchmont, New York

Mission: Saving lives through education, advances in treatment, and finding a cure for Barth syndrome.

Lindsay B. Groff, MBAThe Barth Syndrome Foundation is the only world-wide volunteer organization dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS). The Foundation started in 2000, after the first international conference held in Baltimore, M.D. where families from around the world met to discuss BTHS. The Foundation strives to accelerate progress through collaboration between families and scientists, and encourage family participation in research.

The Barth Syndrome Foundation is an international organization, with affiliates in Canada, the UK, France and Italy, that supports families living worldwide, knowing that it is only through a unified approach that the community can succeed in finding a cure for this rare disease. The Foundation and its affiliates are dedicated to generating a positive force to ensure that Barth syndrome no longer causes suffering or loss of life.

Barth syndrome is a serious X-linked genetic disorder, primarily affecting boys and men, caused by a mutation in the tafazzin gene that results in an inborn error of lipid metabolism. While the Foundation funds research specific to Barth syndrome, research has also found that there are implications outside of this rare disease that has a much broader reach in areas like heart disease or diabetes.

“Without medical research, those affected by Barth syndrome will continue to suffer,” said Lindsay B. Groff, MBA, Executive Director of BSF. “Research is vital to find answers to the underlying questions about Barth syndrome.”

BSF provides seed funding to investigators for testing initial hypotheses and collecting preliminary data leading to successful long-term funding by National Institutes of Health and other major granting institutions. Prior to BSF’s grant program, there were few, if any, drug discovery plans for Barth syndrome. Currently, there are plans to test Barth syndrome-specific therapies in humans. These specific therapies go beyond what has been done so far by taking advantage of the research knowledge gained over the years. There are now several different therapeutic ideas that may make a real difference for those suffering from the disease.

Major challenges, Groff said, are shared by everyone advocating for rare diseases: “One, lack of funding.  We must continue to support efforts to increase funding for all medical research. Two, we need to find a better way for researchers to work together, collaboratively, without fear of competition.”

Collaboration is a particular challenge in research, Groff said, but it is important to have people work together instead of in silos. Every two years, BSF convenes a conference bringing scientists and patients together to help foster that collaboration. In 2016, the International Scientific, Medical and Family Conference brought together 80 researchers and clinicians and 201 affected family members.

At the conference scientists and clinicians come to know the names and stories of the young people who suffer from this disease, and families appreciate their own critical role in helping researchers prove the safety and efficacy of proposed treatments by testing them in their own children. Finding successful treatments and a cure for Barth syndrome becomes a very personal thing for everyone on the team, Groff explained.

BSF is committed to advocate for families and patients, and constantly seeks new resources to assist in ways to become better informed and opportunities to build our skills for the organization.

“When Research!America increases public and policymaker awareness of the health and economic benefits of medical research and builds a strong base of citizen support for more research and innovation, we all win,” Groff said. “Not one of us can do this alone.”

From Washington

Advocates from Across the U.S. will Rally for Research

On Thursday, September 22, scientists, patients, advocates, young investigators, and research leaders representing more than 100 organizations will travel from across the country to Washington, D.C. to elevate the importance of medical research investments to policymakers. Research!America is one of the many supporters of the Fourth Annual Rally for Medical Research. The goal of the Rally is to underscore the urgent need for robust and sustained resources for the National Institutes of Health (NIH).

Last year, the NIH received an additional $2 billion for FY16, the largest increase the agency has received in over a decade. Rally advocates will meet with members of Congress to not only thank them for the boost, but also convey the critical need to continue the momentum by providing another funding increase of $2 billion for the NIH in FY17.

Rally participants will attend an afternoon training session the day before the event, followed by a reception to celebrate medical research at the Cannon House Office Building in the Cannon Caucus Room. The next day, participants will be invited to a kick-off breakfast at the Mayflower Hotel before starting a full day of meetings with House and Senate offices.

Research!America and many other groups will create “buzz” leading up to the event by posting messages about the Rally on Facebook and Twitter using #RallyMedRes. The Rally for Medical Research website is filled with resources and information about the event and advocates are also encouraged to take photos with the “I Rally For…” card available for download.  

For more information about the event, click here

Public Health Fair

Interactive exhibits that featured live tarantulas and monitored heart rates engaged many advocates at  the first annual Public Health Fair on Capitol Hill in mid-July. The fair, hosted by the Coalition for Health Funding, included exhibitors from more than 40 national health organizations and six federal public health related agencies. The tarantulas were part of a study on anxiety and phobias. Research!America participated in the fair as an exhibitor and promoted Public Health Thank You Day, held annually the Monday before Thanksgiving. Congressional Public Health Caucus co-chairs Rob Wittman (R-VA) and Gene Green (D-TX) emphasized the important role of public health in society in remarks.

In the News

Media Matters

Closing the Empathy Gap

Research!America president and CEO Mary Woolley penned an op-ed for The Huffington Post about Americans’ desire for their candidates to elevate the priority of research. “One issue that a majority of Americans can agree on is advancing research to combat deadly and debilitating diseases. It would be both refreshing and well-received if candidates for President and Congress were to elevate medical progress in conversations with voters,” she wrote.

20 Science Questions for Presidential Candidates

Rush D. Holt, Ph.D.Research!America was mentioned in several media outlets including POLITICO Pro, BioScience Technology and on NPR’s Science Friday for partnering with and other groups to urge presidential candidates to respond to a science questionnaire.

Research!America board member Rush D. Holt, Ph.D., CEO, American Association for the Advancement of Science (AAAS), was quoted in The Washington Post, Washington Examiner and other media outlets about the questionnaire.

Medical Research and CollaborationJay A. Gershen, DDS, Ph.D.

The Sullivan Alliance published an op-ed by Mary Woolley and Jay A. Gershen, DDS, Ph.D., president, Northeast Ohio Medical University (NEOMED) about how health facilities and research institutions can partner with government and industry to improve the health of citizens.

Cancer Moonshot

Research!America vice president of communications Suzanne Ffolkes, was quoted in an Bloomberg BNA article about Hillary Clinton’s promise to continue Joe Biden’s Cancer Moonshot Initiative.

Opioid Prescriptions

Harold L. Paz, M.D., M.S., EVPIn a Healthcare Finance article about an Aetna letter sent to the top 1 percent of physician opioid prescribers, Research!America Board Member Harold L. Paz, M.D., M.S., EVP and CMO, Aetna, said the letter is part of a company initiative to share best practices for prescribing opioids and to help doctors understand how their opioid-prescribing habits compare to those of their peers.

Party Platforms and ConventionsMary Woolley, President and CEO

A podcast from The Lancet featured comments from Mary Woolley about Hillary Clinton’s track record on research for health and the Democratic platform. She was also quoted in the publication about science and research in the Democratic Party platform and in comments at the Democratic national convention.

NPR’s Marketplace aired a story featuring Suzanne Ffolkes about advocates and lobbyists cultivating relationships at political conventions. “You never know when you might meet some influencers [in research for health] who you can work with in the future,” she said.

Funding Zika Research

In a Bloomberg BNA article about Zika virus funding running out in September, Mary Woolley underscored the urgency to increase resources for disease surveillance, treatment and prevention. “We must put research to work if we want to eliminate this public health threat,” she said.

Media Contacts

Suzanne Ffolkes
VP Communications

Anna Briseño
Communications Manager

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