Tag Archives: Alzheimer’s disease

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 →

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Cuts to NIH research squeezes young scientists out

Op-ed by Abigail Schindler, PhD, postdoctoral fellow at the University of Washington, Department of Psychiatry and Behavioral Sciences and co-leader of the Seattle Forum on Science Ethics and Policy published in The Seattle Times.

Abigail1When I think about not being a scientist anymore my heart hurts. But sadly, due to continued budget cuts to biomedical research, within the next few years that is most likely exactly what I will be — no longer a scientist, no longer a researcher searching for cures for disease.

And I am not alone. The number of young scientists being forced out of basic biomedical research in the United States is increasing at an alarming rate, and when this next generation of scientists leaves, it is not coming back.

Like me, these are early career scientists trained in the United States by U.S. tax dollars. We are scientists whose life goal has been to one day have our own research program at an academic institution committed to the search for breakthroughs and cures. Yet because of these budget cuts, catchphrases such as the “brain drain” are proving true. This is a bad omen for U.S. global leadership in biomedical research and the future health and wellness of our nation.

The National Institutes of Health (NIH) is the nation’s premier biomedical research agency and the leading supporter of biomedical research in the world. Despite numerous public polls showing strong support among Americans for government funding of basic biomedical research, NIH’s budget was cut by $1.5 billion this year, or 5 percent, from $31 billion. Continue reading →

Budget sequestration could soon cost us in lives

An excerpt of an op-ed by Robert I. Field, PhD, JD, MPH, professor of the Earle Mack School of Law & Drexel School of Public Health published in Philly.com.

Robert I. Field

Robert I. Field, PhD, JD, MPH

What do we get when Congress cuts federal spending across-the-board? Does it bring lower taxes, smaller deficits, and less bureaucracy?

How about worse health care, less medical innovation, and lost lives?

The budget sequester that Congress enacted in 2011 began to take effect this year with spending cuts for most federal programs. So far, the majority of Americans have seen little change. Some may even applaud the idea of forcing the federal government to make due with less.

But the sequester is about to exert an especially sinister effect that lies just outside of public view. It could cripple medical research.

The National Institutes of Health is the largest single source of biomedical research funding in the world. It supports work at most universities in the United States and at many around the world.

That’s not just important to the physicians and researchers who work at those institutions. It’s vitally important to everyone. NIH funding stands behind the development of almost every major drug that has emerged over the past 50 years. You can see the impact of this agency every time you open your medicine cabinet. It has also brought us countless medical devices and procedures. And led to 83 Nobel prizes. Continue reading →

UK plans to use presidency of the G8 to develop international agenda to address dementia

The United Kingdom recently announced a plan that will capitalize on its role as President of the G8 to promote an international cooperation to stop dementia.

This announcement sparks the beginning of increased international collaboration among world governments, industry and non-governmental organizations. Representatives of these diverse entities will gather at an upcoming dementia summit in London, scheduled for September. The global impact of dementia and Alzheimer’s is undeniable—over 35.6 million people worldwide battle with dementia. With the aging global population, this figure is predicted to exceed 110 million people by 2050. Continue reading →

Rally for Medical Research: Building a grassroots movement to make medical research a higher national priority


Thousands of scientists, patients and research advocates gathered on the grounds of the Carnegie Library in Washington, DC, on April 8 to unite behind a call for increased funding for medical research. The Rally for Medical Research was organized by the American Association for Cancer Research in conjunction with their annual meeting and was supported by more than 200 partnering organizations — including Research!America. The program featured statements from patients and their families, scientists, policy makers, and research advocates. Cokie Roberts of ABC News and NPR, cancer survivor and research advocate, was the master of ceremonies. Continue reading →

One in three seniors dies with Alzheimer’s or dementia

A new report from the Alzheimer’s Association reveals that one in three seniors suffer from some form of dementia or Alzheimer’s by their death. Deaths attributed to Alzheimer’s and dementia have increased 68% from 2000 to 2010.

Harry Johns, president and CEO of the Alzheimer’s Association and Research!America Board member, said in an Alzheimer’s Association release  that “urgent, meaningful action is necessary, particularly as more and more people age into greater risk for developing a disease that today has no cure and no way to slow or stop its progression.”

USA Today reports that the number of people with Alzheimer’s disease is expected to nearly triple by 2050, resulting in an increasing burden on medical costs and caregivers. Currently, there is no way to prevent or slow the progression of Alzheimer’s or other types of dementia.

With growing health care costs consuming the federal budget, policy makers are considering ways to reduce the cost of Medicare and Medicaid. The Alzheimer’s Association predicts that the direct cost of caring for individuals with Alzheimer’s will total more than $200 billion in 2013 alone, with nearly $150 billion of that spending expected to come from Medicare and Medicaid. Increased investments in medical and health research will help improve the treatment and prevention of dementia and Alzheimer’s disease.

“We have wanted to see a $2 billion commitment to research, because we’ve seen what has happened in diseases like HIV/AIDS when a big financial commitment is made,” said Maria Carrillo, PhD, vice president of medical and scientific affairs at the Alzheimer’s Association, in the article. Over the same 10-year period that saw an increase in Alzheimer’s deaths, HIV/AIDS related deaths decreased 42%, according to the Alzheimer’s Association study.

This report shows that now is not the time to cut back on America’s investment in biomedical and health research. Contact your representatives and urge them to make research for health a higher national priority.

A Weekly Advocacy Message from Mary Woolley: Romney adds Ryan and healthcare to election conversation

Dear Research Advocate,

With Rep. Paul Ryan joining the Romney ticket, health is back on the national agenda. Partisan politics aside, this conversation is overdue, since health is indeed an issue that will make or bankrupt us. Research has always figured prominently in the wellbeing of Americans and America – research brought an end to the polio epidemic, which could have bankrupted the nation in the 1950s, and research is the only answer to the scourge of Alzheimer’s that threatens health, quality of life and our national checkbook today. And that is just a starting point for the conversation I hope you are having with everyone who wants to talk about the election. Take the opportunity to bridge from health care to health research and remind Americans that research must be a higher priority. As Research!America Chair and former Congressman John Porter has said, “Priorities will be chosen, and money will be spent.” Let’s make sure health research is a top priority.

How much do we know about Rep. Paul Ryan’s position on our issues? One place to start is with Rep. Paul Ryan’s response to our Your Congress – Your Health questionnaire of 2007. In his responses, Rep. Ryan calls for increasing NIH funding and endorses the importance of STEM education, although not federal support for stem cell research. Obviously, the political and fiscal climate has shifted dramatically since 2007, and the “Ryan budget” passed earlier this year by the House could deprive discretionary programs of funding vital to research, (see my comment in Medpage Today).  

The case for research today is in fact stronger than it was five years ago. The Wall Street Journal has published an op-ed by two Nobel laureates, providing a clear and compelling case for the government’s role in fostering basic research — and including research in economics — yielding huge dividends for our health and economy as a whole. Dr. Peter Kohler, Vice Chancellor at the University of Arkansas for Medical Sciences has published a piece carrying an equally compelling message in the NWAonline and a terrific op-ed has appeared in the Press Democrat by Dr. Dennis Mangan, a former NIH program director now working as a science communication advisor in Santa Rosa, CA. It would be a privilege to work with you on your own op-ed or letter to the editor making the case for policies that promote continued medical progress.

In past letters, I’ve written about the sequester and its potential for gutting funding for health research. The Coalition for Health Funding, of which Research!America is a member, has released a grassroots toolkit to educate and equip advocates to fight the sequester. Please circulate these tools to your networks and make sure that we stand together against the sequester. Make it a point to engage with candidates while they are campaigning around the nation this month.

Sincerely,

Mary Woolley

One Voice for Global Health

When advocates speak with one voice, amazing things can happen. Here in the U.S., with help from high-visibility breast cancer advocates, the federal budget for breast cancer research has increased nearly eight-fold over a 20-year span. More recently, the National Alzheimer’s Project Act redoubles public efforts to find a cure for this devastating disease.

The fight against AIDS stands as perhaps the most telling example of the power of advocacy. The voices of so many, amplified by entertainment heavyweights, have helped shine a light onto efforts at combating the disease, from prevention to treatment.

Research, of course, plays no small part in either area, from the tantalizing goal of a vaccine to the antiretrovirals that have turned an HIV diagnosis from a death sentence into a manageable chronic disease. And one panelist at AIDS 2012 – going on this week in Washington, DC – sees research as an entryway into advocacy.

“Research is an opportunity to build sustainable advocates behind one voice for global health,” said Prince Bahati of the International AIDS Vaccine Initiative.

Research brings together diverse constituencies: It pushes the frontiers of scientific knowledge, it improves health around the globe and it positively affects local economies.

But one word in his statement is not to be minimized: “opportunity.” Research, and the people who perform research, cannot be the sole voice; instead, research becomes a gateway to help build out the advocacy community. A full – and full-throated – advocacy community has the chance to change the world.

Part of that diversity was on display all week at the conference: Veterans groups and faith-based organizations were among the constituencies represented.

Those many, diverse voices are needed now more than ever. The U.S. contribution to AIDS research is significant, but there are no priorities in the current political climate. Christine Lubinski of the Infectious Disease Society of America (IDSA) encouraged the audience to do its homework before meeting with congressional offices. She cited Research!America’s economic impact work, saying that we must try to demonstrate a domestic constituency for these issues, with U.S.-based research being a clear entry point. She also gave some words of advice for those who face policy makers that say our AIDS situation is leading us into a “treatment mortgage” for 30 years: It is actually a temporary bridge until research yields a vaccine. Congress used to have similar debates regarding polio and the “iron lung,” debates that evaporated when science produced a polio vaccine.

We also know that sometimes research has unexpected and multiple benefits for worldwide health. For example, AZT was developed to treat cancer. It failed in that regard, but federally funded scientists discovered that it works for HIV/AIDS.

Research and its advocates, as part of the larger advocacy community, have a clear role to play. Each voice adds to the chorus – and we’ve seen what those voices can do.