Tag Archives: Parkinson’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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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 →

Member Spotlight: Parkinson’s Action Network

The genesis of the Parkinson’s Action Network goes back to 1987, four years before the organization’s founding. That year, Joan Samuelson left a career in law after being diagnosed with Parkinson’s disease; she threw her might into advocating for people living with Parkinson’s. Four years later, PAN was born, and its successful advocacy continues today.

Parkinson’s Action Network

The Parkinson’s Action Network (PAN) is a unique organization in the patient advocacy world. PAN represents the entire Parkinson’s community on funding and quality of life policy priorities for those living with the disease. PAN works with other national Parkinson’s organizations and is the only organization addressing government programs and policies that impact the Parkinson’s community.

“We’ve worked on a vision that if our community came together on policy issues, with one, singular voice, we would be much more effective,” said PAN CEO Amy Comstock Rick, JD, who became a Research!America Board member in March. “Really in the last 10 years, we’ve been able to effectively achieve that mission so that PAN is the only organization in the Parkinson’s community that works on policy issues, even though we have a number of national organizations.” Continue reading →

President Obama announces BRAIN Initiative

President Barack Obama unveiled the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative on Tuesday. Described in a White House press release as one of the administration’s “Grand Challenges,” the goal of the initiative is to bring private and public sector research together to accelerate the development and application of technology and research into the function of complex neural networks. President Obama laid the ground work for today’s announcement during his State of the Union address in January, calling for an increased investment in research to achieve “a level of research and development not seen since the height of the space race.” Continue reading →

April is Parkinson’s Awareness month

PDF AprilParkinson’s disease affects millions of people worldwide. Patient advocacy groups like the Parkinson’s Disease Foundation and the Parkinson’s Action Network provide resources to patients and advocacy tools to promote more research on this devastating disease. PDF has a toolkit to empower advocates and patients to spread the word, educate themselves and others and learn more about Parkinson’s research funded by PDF.

PAN Tulip

Meanwhile, PAN is urging advocates to contact their representatives in Congress to support a bipartisan effort to increase funding for the National Institutes of Health; you can also plant a virtual tulip in honor of a loved one and make a contribution to PAN in their honor.

Survivor Margaret Tennent writes on PDF’s patient stories what it is like to live with Parkinson’s:

Continue reading →

Capitol Hill Briefing: Parkinson’s Disease and Crowd-Sourced Research

23andMe — the company helping individuals interpret their own DNA — is hosting a Capitol Hill briefing September 13 that will focus on the role of crowd-sourcing as it relates to the future of research on Parkinson’s disease.

The event will be held from noon to 1 p.m. at the House Visitors Center, Room 201.

Speakers include Maryum Ali, daughter of legendary boxer Muhammad Ali and a Parkinson’s activist; former astronaut Rich Clifford, a Parkinson’s activist and patient; and Anne Wojcicki, co-founder and CEO of 23andMe.

Crowd-sourcing has proven to be a successful method of researching Parkinson’s; 23andMe discovered two new genes associated with Parkinson’s using just this approach. It and other groups, like the Ali family and the Michael J. Fox Foundation, have also made significant gains in research using crowd-sourcing. And with the current burden of Parkinson’s — 500,000 people diagnosed, a total cost to the U.S. of more than $6 billion per year — only expected to increase as Baby Boomers age, any advances in research on Parkinson’s is welcome.

To learn more about the event or to RSVP, contact Darren Willcox at DW@WStrategies.com.