Dear Research Advocate, The Research!America 2019 Advocacy Awards nominations are now open! Act now to nominate the stellar advocates you want to recognize for outstanding leadership in medical, public health and other scientific research. The awards will be presented at our dinner on March 13, 2019. My recent letters have mentioned the possibility of the president sending a rescission package to Congress. At this point, it’s more a matter of when, not if he will request billions in “clawbacks” of already appropriated funds. It’s up to Congress to accept or reject the request. Think about it: for several fiscal years now, federal agencies have not had the benefit of fully functioning...
On behalf of the College of Nursing and Health Innovation at Arizona State University, I am proud to join nurses from across the country in celebrating National Nurses Week 2018. With over 10,000 of our BSN, MSN, PhD and DNP graduates serving throughout the workforce, the education and expertise we provide prepares the next generation of nurses and patient care advocates across the country. This week is a time to not only reflect on the education we provide future generations of nurses, but to celebrate the accomplishments of those nurses who have dedicated their lives to the service of others. At the College of Nursing and Health Innovation, we are fortunate to have nursing faculty whose...
Sickle cell disease affects approximately 100,000 Americans . It’s an inherited disorder where red blood cells contort into the shape of a sickle. These cells die early, leaving healthy red blood cells in short supply and intermittently blocking organ blood flow. If not diagnosed early and properly managed, the disease can lead to serious complications, including severe pain, infection and stroke, and significantly reduced life expectancy. The many complications of sickle cell disease can make every stage of life extremely difficult for individuals with the disease. Making matters worse, many people living with sickle cell disease are unable to access state of the art care. National...
Dear Research Advocate: Research!America was proud to be one of more than 100 groups involved in last weekend’s second March for Science, which took place in over 500 locations worldwide. I had the opportunity to speak at the terrific pre-March rally hosted by AAAS and to talk to the Washington Post and several other media outlets -- it won’t surprise you to know that I reinforced the need for science and scientists to be more visible, not just once a year at the March, but on a regular basis. It comes down to this: to influence a conversation, an opinion, a policy or all three -- it is necessary to engage; it’s so important to regularly say and convey to the American public, “I Work for...
Last year, I attended the Houston March for Science as a Ph.D. student at Baylor College of Medicine. I marched to stand with my community and fellow scientists to foster support for research and scientific funding. I watched as thousands marched toward city hall, nerdy signs in hand, to demonstrate how scientific research has improved our medical care and shaped our understanding of the world. It was a watershed moment for researchers, making it apparent that a public voice for the scientific community was needed. I remember distinctly on that day: our message was heard loud and clear. Since the march, there has been an influx of scientists getting involved in local elections, and advocacy...
“Science not silence!” chanted the crowd at the rally in Washington, D.C. on the National Mall before the 2 nd annual March for Science on Saturday, April 14, 2018. This phrase addressed a major motivation behind the March – scientists recognizing the need to be more visible and engage with the public. Communicating science in non-technical terms is essential if we want to achieve greater public appreciation of science. I will never forget how lost, confused, and unintelligent I felt reading my first biomedical research paper at age 15. Even though it was a school project and our teacher was there to help us, I couldn’t bring myself to ask about all the protein names and interactions that I...
Dear Research Advocate: Is a rescission proposal to cut funding from the recently enacted FY18 omnibus appropriations bill possible? Unfortunately, we can’t rule it out, despite indications from some House and Senate Republicans that they would not vote to backpedal from approved spending. But, we have also been hearing that agencies are having to plan for a possible rescission and a recent article in Politico quotes Senate Majority Leader Mitch McConnell (R-KY) saying “it’s worth a discussion.” I urge you to join that discussion. Backtracking on support for science is not a productive way forward for a nation proud to set the world’s global economic high-water mark. Whether you took action...
Patient advocate Rebecca Black suffered for nearly a decade, undergoing numerous surgeries and dozens of doctor visits, before being accurately diagnosed with endometriosis. Black is not alone. Nearly three-fourths of women with endometriosis experience a misdiagnosis, and it can take almost seven years on average for a woman to be accurately diagnosed. Speakers representing academia, providers and patients discussed ways to address the often-debilitating condition during the Society for Women’s Health Research’s April 10 panel discussion in Washington, D.C. Endometriosis, abnormal tissue growth outside the uterus, can lead to severe pain and infertility. Despite the fact that it affects at...
The April 2018 newsletter is now online . Highlights from this month include: A special insert and recap of the 2018 Advocacy Awards Dinner and honorees. Research!America’s 29th Annual Meeting of Members, with keynote speaker Congresswoman Eddie Bernice Johnson (D-TX-30) , Ranking Member of the House Committee on Science, Space and Technology Upcoming webinars: “What are the Barriers in Advancing Migraine Research?” on Wednesday, April 11, 3:00-4:00 p.m. ET. and “Inspiring Others to be Science Advocates” on Wednesday, April 18, 1:00-2:00 p.m. ET On Saturday, April 14, 2018, scientists and science enthusiasts across the globe will gather for the March for Science, the second annual...
First, thank you for helping us thank “Labor-H” appropriations subcommittee leaders and their respective staff members for their crucial role in securing robust FY18 funding to drive faster medical and public health progress. The final letter was 154 signatures strong… a well-deserved show of appreciation! (Almost) unbelievably, however, the FY18 funding saga continues. Even though the FY18 omnibus has been signed into law, news broke this week that House Majority Leader Kevin McCarthy (R-CA) and President Trump are discussing whether to pursue cuts to the non-defense discretionary funding in it. Under a provision in a 1974 law, the president would formally propose these cuts, or “...

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The capabilities are enormous, a little bit of research can pay off quite a bit in the long run.
Paul D’ Addario, retinitis pigmentosa patient