advocacy

Dear Research Advocate: Setting our nation’€™s sights high, rather than watching Rome burn; that’€™s the advice embedded in a recent op-ed authored by John R. Seffrin, PhD (CEO of the American Cancer Society and Research!America Board Member) and Michael Caligiuri, MD (CEO of the Ohio State University Comprehensive Cancer Center – James Cancer Center Hospital and Solove Research Institute). The authors advocate establishing a national plan, one that puts political differences aside and focuses on combating deadly and tremendously costly disease. There is a compelling argument to be made that if our nation wants to sustain a balanced budget, it must deploy a disease moonshot. If our nation...
The TMJ Association, Ltd. (TMJA), a Research!America member, was founded in 1989 in Milwaukee, WI by two TMJ patients. The organization’€™s mission is to improve the quality of health care and lives of everyone affected by Temporomandibular Disorders (TMD), commonly called TMJ. TMD are a complex and poorly understood set of conditions characterized by pain in the jaw joint and surrounding tissues with limitation in jaw movements. TMD pain may range from mild discomfort to severe and intractable accompanied by jaw dysfunction necessitating a feeding tube for sustenance. For many sufferers, their ability to chew, swallow, make facial expressions, and even breathe is limited. It is estimated...
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. 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...
Dear Research Advocate: According to our new national public opinion poll on clinical trials and related topics, most Americans are willing to share their personal health data to advance research, and 72% would be willing to participate in a clinical trial if recommended by their doctor. This complements what we know from other polling, i.e. that Americans want research to proceed at a pace of scientific opportunity. Yet we continue to lose ground in the gridlocked political environment, which, by its inaction, is dashing the hopes of patients and families anxious for new therapies and cures. What’€™s wrong with this picture? It isn’€™t as though research hasn’€™t yielded both societal and...
Alan I. Leshner, PhD In a recent op-ed published in the Toronto Star Dr. Alan Leshner, Research!America board member, writes that federal deficits in the United States and Canada ’€œpose a significant threat’€ to basic research. He notes that ’€œsome policy-makers seem to value near-term, industry-focused science more highly.’€ But adds that basic science has larger potential payoffs than applied research. ’€œThe most well-known example of life-changing basic research is of course Sir Alexander Fleming ’€™s accidental 1928 discovery of a mould (penicillin) that seemed to repel bacteria. German physicist Wilhelm Röntgen ’€™s 19th century efforts to pass cathode rays through glass now...
By Megan Kane, PhD Megan Kane As reported on Research!America’€™s blog and in numerous media channels, scientists are facing a difficult funding environment made even worse by sequestration. I am one of the members of the ’€œentire generation of scientists at risk’€ that NIH Director Dr. Francis Collins and others have referenced in their warnings about the long-term harm of sequestration. Due to tightening budgets in research laboratories, I was forced to make a decision earlier this year: either delay my graduation from my doctoral program or look for immediate employment outside of a lab environment and possibly never get back to the bench. A colleague pointed me to the advertisement...
Dear Research Advocate: On Wednesday, the House Appropriations agriculture subcommittee approved the funding bill that includes the Food and Drug Administration. The bill allocates nearly $100 million above the post-sequester levels. Unfortunately, the baseline budgets in the House are so low that this increase is still lower than FY12 FDA funding. We must not fall into the trap of lowering our expectations and applauding an artificial victory. The true mark of success is funding that keeps up with need. We must keep working. As demonstrated particularly by the 18.6% cut targeted for the House LHHS appropriations FY14 budget, the pressure to shrink government by slashing discretionary...
Dear Research Advocate: I invite you to join me in speaking out during the Memorial Day congressional recess (May 27-31) as part of a social media campaign using the hashtag #curesnotcuts. Our goal is to continue to position research and innovation to improve health where it belongs: as a fundamental national priority that Americans can count on because their elected representatives rank it so highly. In our social media campaign, each day of the recess has a specific theme that can be customized with your information and patient/researcher stories. We have made it easy to get involved: click here to see sample social media messages, a list of selected congressional offices and their...
Everyone understands that it’€™s necessary to take a hard look at the federal budget and cut costs. The problem with the sequestration is that it recklessly cuts every category of spending across the board at a time when we should maintain critical investments that will pay for themselves in the long run. One of my roles at the University of Pittsburgh is to advocate for federal investment in biomedical research through the National Institutes of Health (NIH), which administers grants to scientists around the country. About 80 percent of all funding for medical research in American universities comes from the NIH. One quarter of NIH funding is for research that leads directly and quickly to...
Research!America extends our congratulations again to all of our 2013 Advocacy Award winners. The dinner was a wonderful opportunity to thank our supporters and advocates for all of their hard work and recognize leaders in the research and advocacy communities. This year’€™s Advocacy Award winners were Sen. Richard Burr (R-NC); Sen. Bob Casey (D-PA); John F. Crowley, patient advocate and chairman and CEO of Amicus Therapeutics, Inc.; Mark Rosenberg, MD, president and CEO of The Task Force for Global Health; John Mendelsohn, MD, director of the Khalifa Institute for Personalized Cancer Therapy and former president at The University of Texas MD Anderson Cancer Center; Diane Rehm, host of ’€œ...

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America’s economic destiny lies in innovation, technology, science and research.
The Honorable John E. Porter