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
Ask Your Candidates! Is Medical Progress a Priority?
Find out what your 2014 Candidates will do in Congress to support medical research
With less than a month remaining before Election Day, now is the time to get involved in the Ask Your Candidates! initiative. Through this effort, voters can ask congressional candidates to share their views on accelerating medical progress in America. Every voice makes a difference as we look to find treatments and cures for deadly and disabling diseases like cancer and Alzheimer’s, and other threats like Ebola.
There are two easy ways to participate:
- Send an email to your candidates using the pre-drafted message, or a message of your own, and by filling in your contact information and clicking “Send Message.”
- Create awareness about the importance of medical research by taking a selfie. Just follow these steps: 1) Personalize an AYC! sign (or create your own sign), sharing why you support medical progress; and 2) Post your signs on Facebook or Twitter, using the hashtag #AYCresearch, or send it to us at askyourcandidates@researchamerica.org. If you’d like to see examples of selfies, see the AYC! selfies Facebook album.
A Weekly Advocacy Message from Mary Woolley: Do we still value discovery?
Dear Research Advocate:
The accomplishments of the recently announced 2014 Nobel laureates in the fields of physiology or medicine, and chemistry are breath-taking. Whether identifying the mechanisms by which the mind comprehends space and place, or enhancing ability to observe how diseases develop, these scientists have, over time, enabled progress that couldn’t have been determined by fiat. Science serves us all via an iterative discovery process, which is why policymakers are skating on thin ice when they censor research that doesn’t promise results that serve a date or purpose certain. Centuries ago, European rulers launched many ventures before eventually discovering the New World — not every journey was a success, nor was everything discovered anticipated in advance. It is ever thus as we continue to explore new worlds, since even as discoveries open new vistas, plenty of surprises occur. Indeed, some new worlds are not as “new” as first thought — to wit, October includes a holiday known to some as Columbus Day and to others as Indigenous Peoples Day. Seeing things in a new light doesn’t mean we should shut down discovery because some aspects of it make us uneasy or call our values into question.
Ebola has called our values into question, to be sure. Do we need a shared sense of existential threat like Ebola to arrive on our doorstep — a “Sputnik moment,” if you will — before Americans mobilize to demand more support for U.S. science? Although there is every reason to believe that the world can contain Ebola — we have contained all previous Ebola outbreaks — there is no denying that we are not as well positioned as we should be to face down this challenge, due to years of under-investment in research and public health, including research on diseases that seem rare and/or remote. My op-ed in Roll Call this week drives home this point, calling on decision-makers to act for NIH, CDC, and, fundamentally, for forward-thinking instead of reactive policies. Continue reading →
Medical research key issue for elections
Letter to the editor by Research!America President and CEO Mary Woolley published in the Omaha World Herald.
This is in response to a Midlands Voices essay (Finish the job, fund medical research, Sept. 25). The authors’ articulate case for robust and sustained investments in lifesaving research represents the interests of all Americans who await cures, as well as better treatments and prevention of Alzheimer’s, autism, cancer and diabetes and more.
Many Americans believe that elected officials are not doing enough to combat deadly diseases, as they repeatedly cut funding and fail to enact policies that stimulate rather than stifle research. Two-thirds of our fellow citizens say it’s important for candidates running for office to assign a high priority to funding medical research, according to polling commissioned by Research!America.
With the midterm elections approaching, now is the right time to ask congressional candidates whether they would set a high priority on research conducted at the University of Nebraska Medical Center, Creighton University School of Medicine and research institutions around the country. Ask Your Candidates, a national voter education initiative, gives voters in Nebraska a simple way to engage candidates and learn more about their positions on assuring medical progress.
Breast Cancer Doesn’t Know It’s October
Excerpt of an op-ed by Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.
As I conducted numerous media interviews about the continued need for research, education, treatment support, and advocacy, it occurred to me that it would be great if we were talking about breast cancer like this every day of the year.
It’s really quite simple. Breast cancer doesn’t know (and doesn’t care) that it’s October, because breast cancer is diagnosed and kills women and men every day of every month of every year. Every 19 seconds, somewhere in the world, a person has a new diagnosis of breast cancer. In the U.S., a woman is diagnosed every two minutes, and one dies every 13 minutes from this terrible disease.
Those are shocking numbers, and behind every one of those numbers is a compelling story. A mother who by sheer will lived long enough to watch a child graduate from high school. A daughter taken too soon from parents who would have given anything to switch places with her. A father carrying a gene mutation that passed breast cancer on to his daughters. A woman without money, without insurance, terrified to seek help until the tumor was breaking through her skin.
I think of these stories in October, and November, and June and April, as does everyone in the breast cancer movement. As much joy as we take in celebrating the women who are cancer-free; as much pride as we take in funding leading research; as much effort as we put into helping the most vulnerable people in our communities, we know that we will be continuing this work until we can shut off the lights and go home, because we’ve cured and prevented this disease.
Read the full op-ed here.
Statement by Research!America President and CEO Mary Woolley on Nobel Prize in Physiology or Medicine
Research!America congratulates this year’s Nobel Prize winners in physiology or medicine, Professor John O’Keefe of the University College London, and May-Britt and Edvard Moser, both of the Norwegian University of Science and Technology. Their discoveries of cells that provide the basis for how the brain maps surrounding space, allowing us to navigate complex environments, may lead to a better understanding of diseases such as Alzheimer’s, which afflicts 44 million people worldwide. O’Keefe, who as a postdoctoral fellow was supported by funding from the National Institutes of Health, made the first discovery of the brain’s “inner GPS” in 1971. The Mosers continued to develop his research, discovering another key component of the brain’s mapping system which shed more light on our ability to navigate. Continue reading →
