Chilling Reality. What’s next for ALS?
The Ice Bucket Challenge raised more than $100 million for ALS research, but turning money and enthusiasm into therapies and cures for the deadly disease is an entirely different type of challenge.
Research!America President and CEO Mary Woolley was among the guests on BioCenturyTV This Week on October 19 to discuss the ALS Ice Bucket Challenge, our national voter education initiative Ask Your Candidates! and the need for stronger support for medical research.
“We need to make sure to tell the people we’re hiring to serve in Congress that it’s really important to fund research for health, and right now is a good time to be doing that,” said Mary Woolley.
Other guests included:
- Dr. Brett Morrison, a physician and assistant professor of neurology at Johns Hopkins University
- Richard Garr, CEO of Neuralstem, a company that is conducting trials of a stem cell therapy for ALS
- Benjamin Corb, director of public affairs at the American Society for Biochemistry and Molecular Biology
Promising Research Can’t Stall for Lack of Funding
Excerpt of a joint op-ed by Research!America President and CEO Mary Woolley and Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.
February 23, 1954, was a milestone in the history of American medical research. That day, children at Arsenal Elementary School in Pittsburgh lined up to receive injections of a promising vaccine. Within months, schoolchildren all over the country were doing the same, and polio was on its way to being eradicated in the United States. The disease, which had killed and paralyzed children and adults alike, would no longer be a threat.
This remarkable achievement would not have been possible without the work of Dr. Jonas Salk and his team at the University of Pittsburgh, and — equally significant — grant support from the National Foundation for Infantile Paralysis, now known as March of Dimes. Policymakers played a role, too, when the Polio Vaccine Assistance Act of 1955 made possible federal grants to the states for purchase of the vaccine and for the costs of planning and conducting vaccination programs.
A generation or two later, millions of individuals worldwide benefited from another major medical breakthrough. Remember when being diagnosed as HIV-positive was an automatic death sentence in the 1980s? Accelerated research supported by the National Institutes of Health (NIH), in partnership with Burroughs Wellcome and Duke University, resulted in the development of AZT, the first drug that slowed the replication of HIV. By 1987, the drug won FDA approval and marked the first major treatment in extending the lives of HIV/AIDS patients. Continue reading →
The More We Invest in Medical Research Now, the More Lives We Save, Improve for Generations
Op-ed by Research!America Chair The Hon. John E. Porter published in The Huffington Post.
Why has science become a take-it-or-leave-it proposition for many Americans? Given all that has been accomplished thanks to our nation’s investment in medical research, the value proposition should be ingrained in the public consciousness — reductions in deaths from heart disease and stroke, the eradication of polio in industrialized nations, transformation of HIV/AIDS from a death sentence to a manageable chronic illness, a sense of justifiable optimism instead of despair when a child receives a cancer diagnosis. So much more is within reach if we summon the public and political will to end Alzheimer’s, prevent diabetes, put more cancers in the history books, effectively address mental illness, provide new medical technologies for our wounded warriors. The list goes on.
What will it take to raise awareness and build a greater appreciation of science among Americans and policymakers? Scientists themselves are the most trusted messengers for research, according to polling commissioned by Research!America, yet they are largely invisible to the public. A majority of Americans cannot name a living scientist and many do not know where research is conducted in the U.S. This underlying knowledge gap has led some to question the value of taxpayer-funded research. “If I can’t see it, it must not exist” has worked against research as anti-government sentiments combined with deficit-reduction imperatives drive decision-making on Capitol Hill. This attitude has led to a dearth in federal R&D investments, policies that hinder private sector innovation, challenges in combating global health threats and unreasonable attacks on behavioral and social sciences research. Federal support for medical and health research has also waned as many elected officials seek to diminish government’s role in accelerating medical progress on the mistaken assumption that the private sector and other entities will bear that responsibility.
Sequestration, the automatic spending cuts that stalled important research across the country, and years of flat-funding as homeland defense swept other priorities aside, have shifted the balance with federal funding for research on a downward trajectory. In reality, the public and private sector work hand-in-hand, relying on the discoveries derived from basic scientific research to develop the next blockbuster drug or medical device that could relieve the suffering of millions of patients; one cannot thrive without the other.
It’s time to recognize how different our lives would be without federally-funded research. Many scientific discoveries supported by the National Institutes of Health, the National Science Foundation and other federal agencies that we take for granted have improved our quality of life and protected us from major health threats. Why would we slow down the march of progress? Scientists can play a major role in ensuring that the American public connects the dots of the research pipeline by describing the importance of research in bringing new therapies and cures to market and reducing inefficiencies in our healthcare system.
Speaking at town hall meetings, at the local chamber of commerce or addressing students are some of the ways scientists can engage with the public and elected officials. Volunteering as a science advisor for candidates running for local or national office will help to enlighten and cultivate individuals who can potentially become champions for science in government. Only then can we expect Americans to rally for science and reject attempts by policymakers and others to undervalue research as a major contributor to our nation’s health, national defense and economic stability.
Also read op-ed by Research!America Board member and American Heart Association CEO Nancy Brown on the importance of medical research, here.
CU Scientists’ Discovery Could Lead to New Cancer Treatment
blood cancer
The University of Colorado’s Gates Center for Regenerative Medicine and Stem Cell Biology just announced a potentially game-changing discovery in stem cell research for blood cancers and a whole host of other diseases.
Yosef Refaeli and his research team have found a way to expand blood stem cells. This is big news because blood stem cells can help treat blood cancers like leukemia and lymphoma as well as inborn immunodeficiency diseases such as sickle-cell anemia and autoimmune diseases like multiple sclerosis. But up until now, treatment using blood stem cells has been limited by the number of cells a patient can produce. Hundreds of thousands of Americans could be affected by this discovery.
The research was supported in part by funding from the National Institutes of Health.
The goal now is to move the technology from the lab into clinical trials. Colorado-based biotech company Taiga Biotechnologies is in the process of setting up the trials.
The research was originally published in the academic journal PLOS ONE. Read the paper here.
Member spotlight: Texas Biomedical Research Institute
By Robert Gracy, PhD, CEO of Texas Biomedical Research Institute
Now in its eighth decade of existence, the Texas Biomedical Research Institute in San Antonio, Texas, has a mission “to improve the health of our global community through innovative biomedical research.” Texas Biomed has a breadth and depth of scientific inquiry coupled with an unparalleled collection of research resources, which in combination provides its researchers unique capabilities. Texas Biomed also views partnering with Research!America – a strong advocate for growing our country’s investment in biomedical funding – as retaining an effective ally in maintaining and eventually strengthening the backbone of our country’s preeminent position in the biomedical research field.
In the Department of Genetics, researchers are examining the genes related to complex diseases such as cardiovascular illness, diabetes, obesity, metabolic syndrome, macular degeneration, behavioral and psychiatric disorders, arthritis and osteoporosis – hoping to ultimately provide the foundation of knowledge that can lead to better treatment of these devastating illnesses and to personalize care according to the genetic profile of each patient. Continue reading →
A Weekly Advocacy Message from Mary Woolley: Labor Day Weekend Check List
Dear Research Advocate:
Labor Day might mean a last chance for R&R, but it also means that election day is right around the corner. It only takes a minute to send a quick email or direct a tweet to candidates. Think of them as candidates for the role of R&D champion! And take a moment to share this call to action with your colleagues, friends and family. The power of social media is undeniable.
There are only 10 days until Congress returns to Washington to face a lengthy to-do list, which is unlikely to shrink much before the November elections. Appropriations action for FY15 has stalled out, with new battle lines being drawn over the time span for a Continuing Resolution (CR). Whatever the length, a CR is no more a solution than is kicking the can down the road on tax provisions. The medical device tax remains unchanged despite its intuitively counterproductive effect on the capital needed to develop lifesaving medical technologies, not to mention the jobs and new businesses that go with that development. In addition, the R&D tax credit has not been renewed, let alone enhanced or made permanent. If we want our GDP to grow, our tax policies should be aligned with that goal. As things stand, if we don’t figure out how to boost our economy, China’s GDP is projected to surpass ours by 2017. Continue reading →
Federal Health Agencies Ramp Up Efforts to Fight Ebola
Colorized transmission electron micrograph revealing some of the ultrastructural morphology displayed by an Ebola virus virion. Photo credit: Frederick A. Murphy
The Centers for Disease Control and Prevention (CDC) sent more than 50 disease detectives and other highly trained experts to West Africa to battle Ebola. While here in the U.S., more than 350 CDC staff are working on logistics, communications, analytics, management and other functions to support the response 24/7 at CDC’s Emergency Operations Center.“We are fulfilling our promise to the people of West Africa, Americans, and the world, that CDC would quickly ramp up its efforts to help bring the worst Ebola outbreak in history under control,” said CDC Director Tom Frieden, MD, MPH. “We know how to stop Ebola. It won’t be easy or fast, but working together with our U.S. and international partners and country leadership, together we are doing it.” Read more here.
Meanwhile, researchers at the National Institutes of Health (NIH) and the National Institute of Allergy and Infectious Diseases (NIAID) are studying Ebola and seeking better ways to diagnose and treat the disease. In 2013, the NIAID reported spending $42.49 million on Ebola research. Public-private partnerships are critical to containing and preventing such deadly outbreaks. The NIAID is collaborating with Okairos, a biotech company, to develop Ebola vaccines. The NIH is working with the drugmaker Mapp Biopharmaceutical to scale up production of its Ebola drug Zmapp and partnering with BioCryst to advance the company’s experimental treatments.
Sustained and robust federal funding is needed to respond to global health threats, and to support the development of vaccines to combat Ebola and other deadly diseases. Policymakers must assign a higher priority to medical research to ensure the health and wellness of Americans.
Click here to urge your representatives to support increased funding for federal health agencies in FY15.
How To Help Accelerate Medical Progress In America
Excerpt of an article published in the Imperial Valley News.
Each year in the United States, nearly 16,000 kids are diagnosed with cancer. And on any given day, as many as 5 million Americans are living with Alzheimer’s disease. Beyond its debilitating symptoms, the death rate for Alzheimer’s is on the rise.
But there are steps you can take to protect your family from these potentially devastating medical conditions.
One idea that may come as a surprise to many Americans is to contact your congressional representatives and the candidates for their seats.
That’s the suggestion of a national, nonpartisan, voter education initiative called “Ask Your Candidates!” designed to empower voters to talk to candidates about the future of medical progress in the United States. Congress plays a key role in influencing the future of lifesaving research. Many voters are asking candidates if, once elected, they will vote to increase federal funding for medical research and support policies that spur innovation.
The initiative helps voters engage candidates on social media and through local events, grassroots, advertising and other interactive projects.
Read the full article here.
Communicating Your Science to the Non-Expert
On July 23, the Society for Neuroscience held its first interactive webinar titled “Communicating Your Science to the Non-Expert.” During the webinar, speakers discussed how to effectively describe the health and economic impact of your research to a nonscientific audience including policymakers and the media. The presentation covers the basics of crafting an elevator speech and a question and answer session with scientists.
Watch the entire recording online or one chapter at a time:
- Part 1: Introduction, Scott Thompson, PhD, professor and chair for the Department of Physiology, University of Maryland School of Medicine
- Part 2: Why Communicate?, Scott Thompson, PhD
- Part 3: Crafting Your Story, Suzanne Ffolkes, VP of Communications, Research!America
- Part 4: Putting It All Together, Leslie Tolbert, PhD, Professor of Neuroscience, Cellular & Molecular Medicine, University of Arizona
- Part 5: Question and Answer Session, Anne Young, MD, chair of SfN’s Government and Public Affairs Committee; Scott Thompson, PhD; Suzanne Ffolkes; Leslie Tolbert, PhD
Research!America Blog 