A Weekly Advocacy Message from Mary Woolley: Will research have every opportunity to conquer Alzheimer’s?

Dear Research Advocate:

We are finally seeing action to address the surfeit of regulations placed on the research community. Accountability is essential, but it isn’t a function of how thick the red tape is! The Research and Development Efficiency Act, HR 5056, passed the House this week and is pending before the Senate Committee on Commerce, Science and Transportation.

This is but one example of the direct effect that your legislators can have on medical research. Do you know what your candidates will do to advance medical progress if elected on November 4th? Our Ask Your Candidates! national voter education initiative highlights the views of candidates. We are counting on you to help us reach more candidates. Click www.askyourcandidates.org to see if your candidates have responded—if so, say thank you (Why say thank you?  Because potential champions need to know there is an army of supporters standing behind them!)—if not, ask them to weigh in.

Why should voters and candidates care about medical progress? I can answer that in one word: Alzheimer’s. This disabling and breathtakingly expensive illness is in the news this week as scientists announce new research findings at the Alzheimer’s International Conference in Copenhagen.  A major randomized prevention trial showed that a behavioral intervention featuring changes in diet and exercise produced significant cognitive improvement in Alzheimer’s patients.

This finding underscores the value of “prevention science,” or the identification of science-backed behavioral interventions that help avoid, delay or minimize the effects of illness. Behavioral interventions can seem controversial because lifestyle choices are involved. That doesn’t mean we can hide our heads in the sand and ignore the imperative of better understanding the links between behavioral variables like smoking, diet and exercise, and noncommunicable diseases. The news out of Copenhagen underscores the point that it’s time to run toward the science of prevention, rather than away from it.

Speaking of which, a commentary by Dr. Derek Yach in the July 17, 2014 issue of The Journal of the American Medical Association emphasizes the importance of prevention science. “More investment in prevention science could lead to greater health gains at lower cost … Investing in prevention should be a strategic national priority.” We agree.

This week, we feature Paul D’Addario in our ongoing fact sheet series about individuals who benefit from medical progress. Paul started to lose his vision to Retinitis pigmentosa at age 27 and was effectively blind by his 40’s, forcing him into early retirement. In 2007, he had an experimental chip (now Food and Drug Administration approved) implanted into his eye, restoring his ability to see contrast. This has allowed him to safely cross streets and perform other daily tasks. The ability to restore sight, even partially, was once strictly science fiction. Funding from the Department of Energy’s National Laboratories and its Artificial Retina Program, as well as the National Eye Institute, was granted to universities and an industry partner to make this device possible. What new discoveries are we delaying and missing when we slow the pace of medical and health research?

Finally, I am saddened to report the recent deaths of two valued members of our community. Jessie Gruman, 60, the president and founder of the Center for Advancing Health, was a mover of mountains and will long remain an inspiration to those who work in the interest of patient empowerment. Jessie accepted the Research!America award now known as the Paul G. Rogers Distinguished Organization Advocacy Award in 2006 on behalf of the Center for Advancing Health. I have never met anyone more distinguished in the dual attributes of informed, calm tenacity and deeply felt human connectivity. I salute her and extend condolences to her much-loved husband and family.

John Seigenthaler, an indomitable journalist and former Research!America Board Member (1995-2001), passed away last Friday. As someone who understood the importance of medical and health research, he worked tirelessly to encourage scientists to better communicate their work while making the case to fellow editors that science and technology are newsworthy. He guided and informed many of our media outreach programs. He was a force to be reckoned with in so many ways that have made ours a better nation, and will be sorely missed. Our condolences to his family.


Mary Woolley

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