Posts Tagged ‘Stanford Medicine’

Following Transplant Surgery, Twins Advocate for a Change

Tuesday, September 27th, 2011

“The Power of Two,” a new documentary that follows the recovery and advocacy efforts of Anabel Stenzel and Isabel Stenzel Byrnes, is opening at events across the country.

The Stenzel twins were born with cystic fibrosis. Both women were born with cystic fibrosis, and both successfully underwent double lung transplants. In the trailer (as seen above), one of the twins remarks, “When you receive a gift as amazing as a transplant, there is some sense of obligation to give back.”

And the twins are doing just that. The documentary raises awareness of the need for research into CF, which has no cure and limited therapies; it also aims to promote discussions on transplants in the U.S. But another mission, one the twins have embraced, is to change attitudes toward transplants in Japan; the twins are half-Japanese. In the trailer, one of the twins says they have friends in Japan who solicit donations for transplants.

For researchers, several familiar names helped in making the documentary possible. Francis Collins, MD, PhD, director of the National Institutes of Health, is quoted in the movie, as is Howard Koh, MD, assistant secretary for the Department of Health and Human Services. Bruce Reitz, MD, Norman Shumway Professor of Cardiothoracic Surgery at Stanford Medicine – the man who performed the surgery on the twins – is also interviewed. Genetic Alliance is a partner of the documentary. (Stanford Medicine and Genetic Alliance are both Research!America members.)

“Advocacy is the engine of change,” Koh says in the trailer, “and the power of advocacy is it can start with one person. In this case, two people.” (Sound familiar?)

If you’re interested in seeing the movie, there are several upcoming screenings across the country over the next month and a half. Upcoming locations include San Diego; Louisville, KY; Akron, OH; Santa Fe, NM; Fort Lauderdale, FL; Stanford, CA; and St. George, UT. The documentary made its debut in New York, and Members of Congress turned up for a screening on Capitol Hill earlier this month.

Research Advocacy in the News

Wednesday, April 27th, 2011

With federal funding much in the news as Congress debates spending priorities and deficit reduction, Research!America and our members and partners have also been in the news, speaking out about the economic impact of research and its importance to our nation’s health and competitiveness.

Research!America initiated the concept and worked with Richard Bridges, PhD, College of Health Professions and Biomedical Sciences, University of Montana, on an op-ed published today in the Helena Independent Record, yesterday in The Billings Gazette and last Thursday in the Missoulian, both located in the district of Rep. Denny Rehberg (R-At-Large-Montana), chair of the House appropriations subcommittee that oversees HHS agencies. The full op-ed (“Invest in Montana research, continue to reap long-term benefits”) is available online at the links above. Among the points made in the op-ed:

While many Montanans benefit from and appreciate research discoveries, they may not be aware that these discoveries are made right in their own state. As the number and competitiveness of scientists in our universities, hospitals and research institutes have grown dramatically in the past several years, so too has our success in attracting NIH grants. Considering that about 60 to 70 percent of this funding typically supports salaries, it translates directly into jobs: skilled technical jobs, sustainable jobs and well-paying jobs. Indeed, a study by the Families USA Foundation revealed that in 2008, the $38 million awarded to Montana by NIH led to the creation of about 700 jobs. Further analysis by Research!America revealed these health research jobs in Montana had an average annual salary around $55,000. Excitingly, this successful trend is continuing, as 2010 saw further increases in both NIH and NSF awards made to Montana.

* * *
Our current times require that not just scientists speak up, but that all of us who see the long-term value of science voice a call to continue making our national investment in research a priority. Research is the key to Montana’s future.

Research!America’s chair, former Congressman John Edward Porter (R-IL), was cited in The Nation and by Bloomberg News for his leadership in doubling the National Institutes of Health budget in 1998, working with then-Speaker Newt Gingrich in the face of strong budget-cutting pressures. Porter also was interviewed by Nature Medicine’s Spoonful of Medicine blog in a Q&A, “How to protect research funding from the chopping block,” that was picked up by Stanford Medicine’s Scope blog.

Research!America’s President and CEO Mary Woolley was quoted in The Washington Post’s Federal Eye blog on proposed cuts to the National Science Foundation budget and in The Washington Times on the impact of research cuts to U.S. competitiveness. She authored a guest post on PhRMA’s Catalyst blog, noting steps advocates can take now to protect federal funding for medical and health research. For more ways to take action to protect research funding, visit www.researchamerica.org/advocacy or sign-up here for our advocacy alerts.

Research!America’s new Your Congress-Your Health poll data was cited in Nature Medicine’s Spoonful of Medicine blog and by wire services United Press International and Asian News International. See the full poll findings and urge your Member of Congress to respond to the Your Congress-Your Health questionnaire at www.yourcongressyourhealth.org.