Monthly Archives: October, 2013

A Weekly Advocacy Message from Mary Woolley: Forty-three days and counting

Dear Research Advocate:

Yesterday, the Budget Conference Committee, chaired by Sen. Patty Murray (D-WA) and Rep. Paul Ryan (R-WI-01), met for the first time. The committee only has until December 13 to accomplish its task of producing at least a short-term budget. Expectations are modest considering the short timeline, the House and Senate recess schedules, and the number of issues declared “off the table.” There is some talk of replacing sequestration, at least for the remainder of FY14, with selected cuts. In order to assure that research is not cut and in fact is prioritized for an increase, many stakeholders must speak up. It is essential that our issue is discussed as a priority every day in this 43-day countdown — in the media, in hometown districts, by staffers and by our elected officials. Please be sure to speak out. Urge your Members of Congress to advocate on your behalf — and on behalf of all who are depending on research for health — to their colleagues on the Budget Conference Committee.

Sequestration really must go! Useful facts to bolster our case about how sequestration is stalling scientific R&D in this country — to the detriment of business and consumers alike — is now at the ready. Columnist Gerald F. Seib of The Wall Street Journal points to many consumer products and their components that have origins in federally supported basic research, adding billions of dollars to our economy over the decades. And the Science Coalition has released a new report Sparking Economic Growth 2.0 highlighting 100 companies whose beginnings were aided by federally funded university research. Think of Google’s roots in NSF funding and Genentech’s in NIH, for just two prominent examples. The report describes the role these research-based companies play in bringing transformative innovations to market, creating jobs and contributing to economic growth. It’s all too easy to forget, once a business is thriving, how taxpayer funding helped them get its start. Continue reading →

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Meet the 2013 Stem Cell Action Award Winners

The Genetics Policy Institute, a Research!America member, will honor the 2013 winners of its Stem Cell Action Awards at the World Stem Cell Summit, which runs December 4-6 in San Diego.

The Leadership Award will be given to successful businessmen and noted philanthropists Denny Sanford and Malin Burnham. They are honorary trustees of the Sanford-Burnham Medical Research Institute, of course, but their philanthropy extends far beyond that one institution.

The National Advocacy Award will be given to stem cell researcher Paul Knoepfler, PhD, an assistant professor at the University of California, Davis. Knoepfler’s blog is a crucial resource for stem cell science and advocacy. (Research!America won the National Advocacy Award in 2011.)

The Education Award will be given to Mary Ann Leibert, president and CEO of the Mary Ann Leibert, Inc., which publishes more than 100 peer-reviewed journals in science and biomedical research. The company’s flagship publication, Genetic Engineering & Biotechnology News (GEN), began in 1980 and is now recognized as an industry leader. Continue reading →

2013 Canada Gairdner Awards

Since 1959, the Canada Gairdner Awards recognize and reward the achievements of medical researchers whose work contributes significantly to improving the quality of human life. Among the world’s most esteemed medical research prizes, the awards distinguish Canada as a leader in science and provide a $100,000 prize to each scientist for their work.

Four U.S. scientists are among this year’s winners:

  • Canada awardHarvey J. Alter, MD and Daniel W. Bradley, PhD received the Canada Gairdner International Award for their contributions to the discovery and isolation of the hepatitis C virus. Dr. Alter is a senior investigator and Chief Infectious Diseases Section and associate director for research, Department of Transfusion Medicine at the National Institutes of Health. Dr. Bradley is a consultant for infectious diseases viral hepatitis at the Centers for Disease Control and Prevention.
  • Stephen Joseph Elledge, PhD, received the Canada Gairdner International Award for his work in DNA repair. Dr. Elledge is a Gregor Mendel Professor of Genetics and Medicine at Harvard Medical School. Continue reading →

It’s Time to Kick Sequestration to the Curb, Not Down the Road!

Urge your Members to protect medical research in upcoming Budget Conference Committee discussions

Sequestration’s arbitrary, across-the-board budget cuts to defense and non-defense spending have ravaged (and will continue to ravage) our research enterprise. The Budget Conference Committee, which was negotiated as part of reopening the government and preventing the U.S. from defaulting on debts, has an opportunity to replace sequestration as they develop their “long-term budget solution” by December 13. Sequestration is rendering it virtually impossible to maintain, much less increase the budgets of NIH, NSF, FDA, and CDC; if it is not stopped, their budgets will almost certainly decline for the next nine years, regardless of scientific opportunity, public health needs, or the preferences of Americans.  Funding cuts are stopping highly promising research in its tracks, squandering exciting new potential for treatments and cures for millions of Americans who are waiting for them.

Deficit reduction is important, but there are ways to achieve it that do not compromise American lives and American competitiveness. Arbitrary budget cuts that abandon medical research are wrong, and it’s time we kicked them to the curb and not down the road!

Take action now.

Eli Lilly SVP on Research Hurdles and Drug Development

Bart Peterson1

Bart Peterson, JD, Senior Vice President for Corporate Affairs and Communications at Eli Lilly, and the keynote speaker of the Research!America’s National Research Health Forum talked with Medscape about the future of research and drug development, and whether cooperation between industry and the US Food and Drug Administration (FDA) can ever truly exist. To see the interview, click here.

A Weekly Advocacy Message from Mary Woolley: Moneyball

Dear Research Advocate:

Just in time for the World Series, a national campaign to make evidence-based government spending decisions has been announced. Moneyball for Government, a project of Results for America, advocates prioritizing limited taxpayer dollars by investing strategically in what works, eschewing “gut level” instinct for metrics-driven decision-making. Stakeholders in medical and health research sometimes have difficulty measuring or agreeing on metrics that matter; it’s time to work through this challenge so that when stakeholders talk about research accountability — in the current budget conversations or in any context — we can speak with one metric-driven voice to emphasize the returns on research investment in both lives and money saved.

Research!America is working to assure our message is in the forefront of the bipartisan Budget Conference Committee’s deliberations. We have written to the committee expressing the importance of investing in medical and health research to address the national debt and deficit. We urge the committee to eliminate the sequester; it continues to take a toll on our economy and our society, in part by eroding our capacity to innovate in the medical and health fields. Please join us in reaching out to your representatives to share the importance of prioritizing investments in research. Continue reading →

Heroes for scientific knowledge

By Benjamin Caballero MS, PhD Candidate, Department of Developmental and Molecular Biology, Albert Einstein College of Medicine

caballeroAlthough science is perceived to have a fundamental role in addressing major problems of modern society — from climate change to global healthcare — the persistent dwindling of its funding by government agencies is a global trend.  It seems that the betterment of humankind is in jeopardy if this trend continues. But who is responsible for this? And more importantly, how can it be changed?

During the “Research Matters Communications Workshop for Early Career Scientists” at the George Washington University (GW) on October 9 organized by Research!America, Elsevier, Cold Spring Harbor Laboratory,  Society for Neuroscience and GW, this was among many questions sought to be answered. Nearly 100 scientists in different career stages felt that it was us, scientists, responsible for why science is poorly understood by general audiences, hence it is not a priority when decisions to fund it are made by elected officials.  Scientists need to understand that the work performed cannot stay in laboratories. We need to cogently communicate our research, its importance and the implications that could have in the future to a broad public. We need to engage ourselves with society, advocacy and public outreach to explain why basic research is essential for the health and economic prosperity of every man, woman and child.  This will be the first crucial step for science to become more engaged in the public agenda and away from the ivory tower. Continue reading →

Research!America President and CEO Mary Woolley on Al Jazeera America News Network, October 18, 2013

Mary on Aljazeera government shutdown 10-18-13

Big Loss for Science
Science and Medical Research Impacted by Government Shutdown

Last Friday, Research!America President and CEO Mary Woolley was interviewed by Al Jazeera America television news network on the effects of the government shutdown on science and medical research. “Science is 24/7. The government was shutdown but Alzheimer’s was not shutdown, cancer wasn’t, diabetes wasn’t.”

When asked about the biggest problem about the shutdown for science, Woolley said, “I think it was this dispiriting message that science isn’t prioritized anymore.”

Watch the full interview here.

Research!America Honors Leaders in Medical and Health Research Advocacy

Glenn Close, Dr. Leroy Hood, Dr. Reed Tuckson, Kathy Giusti and the Progeria Research Foundation to Receive 2014 Research!America Advocacy Awards

ALEXANDRIA, Va.-October 22, 2013-Research!America’s 18th annual Advocacy Awards will honor extraordinary advocates of medical and health research who are distinguished in their commitment to advancing medicine and health. The event will take place on Wednesday, March 12, 2014, at the Andrew W. Mellon Auditorium in Washington, DC, as a part of Research!America’s 25th anniversary commemoration.

The 2014 Advocacy Award winners are actress Glenn Close and her family; Leroy Hood, MD, PhD, president, Institute for Systems Biology; Kathy Guisti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF); Reed Tuckson, MD, managing director, Tuckson Health Connections; and The Progeria Research Foundation (PRF). The winner of the Edwin C. Whitehead Award for Medical Research Advocacy will be named by Research!America’s Board of Directors later this year.

“This year’s honorees have transformed the lives of many individuals across the country through their remarkable achievements and advocacy for medical and health research,” said Mary Woolley, president and CEO of Research!America. “Their unwavering dedication is helping to elevate research in the national conversation and inspire a new generation of advocates.” Continue reading →

A Weekly Advocacy Message from Mary Woolley: Brink and Blink, and repeat…

Dear Research Advocate:

After 16 costly, wasteful days, the government has been funded through January 15 at post-sequestration, FY13 levels — hardly adequate for providing the solutions the American public awaits. A bicameral, bipartisan budget committee has been charged to develop a long-term deficit reduction plan by December 13. If these marching orders sound familiar, they should: We’ve been down this road before, only this time sequestration isn’t the threat at the end, it’s embedded in the negotiations. As tempting as it is to give in to brinksmanship fatigue and just tune out the process, advocates must seize the opportunity to make sure our issue remains front and center, that it becomes impossible for lawmakers to ignore. Sequestration must go; research and innovation must be an immutable national priority, supported at the level of scientific opportunity that will allow us to overcome health challenges and continue to drive the economy.

We are pursuing every opportunity to make the case on behalf of our alliance. Yesterday, I was privileged to join an impressive group of speakers, including Leon Panetta, at a “stop the madness and do your job” press conference sponsored by the Campaign to Fix the Debt. Among the strong points emphasized by former Secretary Panetta, who also served as White House chief of staff, congressman and OMB director, was a call for long-term — he suggested five years — thinking and budgeting for non-defense discretionary spending. Continue reading →

Life According to Sam

SamNext Monday, October 21 at 9:00 pm EST, HBO will debut LIFE ACCORDING TO SAM, the story of Sam Berns, a young boy with an extremely rare and highly-rapid aging disease called Progeria, and his family’s 13-year fight to find a cure.

This film tells a story not only about the love of physician parents trying to save their son – it also portrays a winding journey throughout the scientific process and the pivotal role that medical innovation plays in our lives. In the film we see children with Progeria gather in Boston from around the world – all expected to live no longer than 13 years – to receive treatment and participate in a first-of-its-kind clinical trial.

The film’s Oscar®-winning Directors Sean Fine and Andrea Nix Fine have earned multiple awards for LIFE ACCORDING TO SAM, winning the “Best of Fest” at the AFI Docs Festival in Washington, DC; the Audience Award at the Nantucket and Martha’s Vineyard Film Festivals the Best Storytelling Award at Nantucket and Best Feature Documentary at the Woods Hole and Rhode Island International Film Festivals.

The Progeria Research Foundation, a Research!America member, is leading the fight to find better treatments – and ultimately the cure – for Progeria, the rare and fatal “rapid aging” disease affecting children around the world.

You can learn more online, visit their Facebook page and follow them on Twitter.

Research Matters Communications Workshop for Early-Career Scientists: October 9, 2013

Research!America’s science communications event, “Research Matters Communications Workshop: Promoting Basic Research in a New Age of Communications: Challenges and Opportunities,” was held October 9 at the Marvin Center on the campus of the George Washington University in Washington, DC.

Leo Chalupa, PhDGWU’s vice president for research, Leo Chalupa, PhD (pictured at right), opened the day with remarks that implored the nearly 100 young scientists in attendance to think about their families when they communicate.

“Act like your Aunt Harriet is in the audience,” Chalupa said; his welcoming remarks indeed laid the groundwork for the workshop, as Aunt Harriet would be referenced frequently throughout the morning.

Research!America President and CEO Mary Woolley followed with an introduction of the plenary speaker; Woolley also hit on a theme that is especially relevant this week. She recalled the story of 2000 Nobel Prize winner Paul Greengard, PhD and his sister, Chris Chase. In an op-ed in The New York Times a few days after Greengard’s win, Chase lamented that she never fully understood the research her brother had undertaken. Upon winning, however, she read news accounts that explained his work as determining how brain cells communicate; this work could one day impact Parkinson’s disease and Alzheimer’s disease.

“I’m thrilled he won,” Chase wrote, and Woolley recounted. “Now I know what he does.”

That segued into the plenary session from Christie Nicholson, a lecturer at the Alan Alda Center for Communicating Science at Stony Brook University. Nicholson (pictured below) began the session by reminding the audience that effective communication isn’t just necessary when dealing with the public; because science has become so specialized, researchers sometimes can’t understand what their own colleagues are saying.

Christie Nicholson

Nicholson explained that it’s important to tell a story. But before you can begin to craft a story, she said it’s critical to not only understand the goal you’re trying to achieve, but also to understand your audience. And to do that, one must know what the audience knows, what the audience cares about and what motivates them. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Does Congress care if Nobel laureates of the future are put at risk?

Dear Research Advocate:

Like most Americans, we are alarmed by the ongoing government shutdown. Since the shutdown began, I have been in Georgia, Massachusetts and Ohio, speaking to business and academic leaders, state and local elected officials, philanthropic leaders, and working scientists. Everyone is outraged! Clearly, biomedical and health research — already compromised via sequestration — is not the only priority placed at risk by the impasse, but it is a critical one. From limiting access to clinical trials to undermining the ability to protect our food supply or investigate disease outbreaks, Americans are put at unnecessary risk when government employees are furloughed. We sent letters at the end of last week to Members of Congress and the president, urging action. We received responses from offices on both sides of the aisle: Many spoke passionately of their support for medical research; some hewed the party line; others lamented the budget impasse.

We are doing everything we can to keep the spotlight on the damage done to medical and health research when the government is shut down. When the public and its policy makers look back on the 2013 shutdown, we want them to remember which government functions most tellingly exemplified the cost — fiscal and societal — our nation incurs when the ability to function is derailed. Continue reading →

Statement by Research!America President and CEO Mary Woolley on Nobel Prize in Physiology or Medicine

Statement by Research!America President and CEO Mary Woolley on Nobel Prize in Physiology or Medicine

October 7, 2013

Research!America salutes this year’s Nobel Prize winners in physiology or medicine, Drs. James Rothman of Yale University; Randy Schekman of the University of California, Berkeley; and Thomas Sudhof of Stanford University. Their transformative research into the cell transport system has unleashed opportunities to develop medicines for the treatment of diseases such as diabetes, epilepsy and other metabolism deficiencies that afflict millions of Americans. The winners, whose research was partly funded by the National Institutes of Health, laid the groundwork for research into how brain cells communicate and the inner-workings of other cells that release hormones. This type of federally funded basic research has spurred the expansion of our nation’s biotech industry, which plays an important role in advancing medical progress and stimulating the economy. The awardees exemplify the spirit of innovation sorely needed to inspire the next generation of Nobel laureates. The Howard Hughes Medical Institute, a Research!America member, also deserves recognition for supporting the work of HHMI investigators Drs. Schekman and Sudhof.

October is Breast Cancer Awareness Month

pinkribbonIt’s Breast Cancer Awareness Month! Although many great strides in new treatments and therapies for breast cancer have been made, patients and their families are still waiting desperately for a cure. According to the American Cancer Society, breast cancer is the most common cancer among American women, except for skin cancers. About 1 in 8 women in the U.S. will develop invasive breast cancer during their lifetime.

This month, organizations will raise awareness and funding for breast cancer, and it’s important that we continue advocating to policy makers, media and the public about the importance of funding research at the level of scientific opportunity. Throughout October, please visit Research!America members American Cancer Society and American Association for Cancer Research to learn more about preventative care, new research and ways you can help make a difference in the fight against cancer.

Now is the time to tell Congress that we need #curesnotcuts; we need access to quality breast cancer screenings, diagnostic services and treatment, and care for all women. Speak up for breast cancer research!