advocacy

Dear Research Advocate, With so much going on in -- and about -- Washington, D.C., it’s easy to overlook the matter of still-unresolved FY17 appropriations. There are members of Congress on both sides of the aisle and in both chambers calling for completion of those bills, and we agree. That’s what our elected representatives should be doing instead of kicking the can down the road with yet another extension of the continuing resolution (CR). Yes, it’s true that if Congress takes up work to complete FY17 spending bills, members will be tasked with developing FY17 and FY18 bills at the same time. Some think this will be difficult for the Senate, with its schedule packed with confirmation...
Dear Research Advocate, Happy New Year! As I contemplate my list of New Year’s resolutions, I know there will be additions even after January 1st. I look forward to the wealth of opportunity for positive change in 2017. My first resolution is to engage -- and encourage and assist other stakeholders to engage -- with our elected representatives in 2017. The new year and the new President and Congress will bring changes we can count on, but outcomes that are unclear. For instance, the President-elect has placed significant emphasis on strengthening our nation’s infrastructure. One clear weakness in that infrastructure shows itself when infectious disease outbreaks threaten the public health...
Dear Research Advocate, Thanks for your indulgence; I’m afraid we’ve been flooding your inbox over the past few days. Most recently, we sent an email moving up the deadline for signing on to a letter to congressional leaders urging them to refrain from passing another Continuing Resolution (CR), and to instead complete their work on FY17 appropriations. We sent that letter out tonight, proximal to today’s announcement by House Appropriations Chairman Hal Rogers (R-KY) that he will in fact pursue a CR that would flat-fund government until March of next year (further delaying, and potentially squandering, any increase in funding for NIH and other health agencies in FY17). While his...
Across the United States, hundreds of thousands of researchers are working to better understand a wide range of diseases and conditions, from cancer to heart disease, to rare disorders to Alzheimer disease, and countless others, in order to improve the health and well-being of people in every corner of America and the world. The lifeblood for the majority of these researchers is federal funding received through the National Institutes of Health (NIH). Through more than 57,000 research and training grants, NIH directly supports approximately 300,000 researchers at more than 2,500 universities and organizations located in all 50 states. This funding, in turn, supports local economies and...
Watch the videos from each panel, read the transcript , view the photo gallery and read the WebMD live recap . “The biomedical research enterprise underpins the health of the nation and much of the world, and is in dire need of substantial infusion to meet the great medical needs of our time,” said William N. Hait, M.D., Ph.D. , global head, Janssen Research & Development, LLC, one of the Janssen Pharmaceutical Companies of Johnson & Johnson, the keynote speaker at the 2016 National Health Research Forum, added that we’re losing time in addressing threats like the Zika virus, Ebola and cancer while waiting for funding to improve for biomedical research. The program, held Thursday,...
This article was originally published on Medium . Thanks to a remarkable outpouring and mobilization of rare disease advocates, August 2016 will go down in the books as the “Summer of Cures.” While our journey on the “#Path2Cures” began three years ago, many, many advocates have been fighting for cures for much longer. Together, we’ve made incredible strides in our effort to deliver #CuresNow. Every story, every single voice matters, and we are grateful for your support and willingness to share your personal experiences with disease. It’s been a tremendous effort by the rare disease community and I am proud to report that we are closing in on the finish line. But we can’t get there without...
For every 1,000 babies born in this country, one to two will have hydrocephalus, and over 1 million people in the U.S. currently live with hydrocephalus. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles, where there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase. There is currently no known way to prevent or cure hydrocephalus and the only treatment option today requires brain surgery. The most common treatment for hydrocephalus—and the most common procedure performed by...
Dear Research Advocate: With congressional primaries back in full swing -- four states held primaries this week alone, with five more to come this month -- we have fresh opportunities to ask candidates for national office what they would do, if elected, to speed medical progress and incentivize innovation. Check out our interactive map to see what your candidates have to say -- we have been adding quotes daily. This is important: if you don’t see your candidates on the record, please send them a message urging them to register their thoughts. Research!America has joined ScienceDebate.org and other organizations to call on presidential candidates to respond to a questionnaire about...
Dear Research Advocate: The Cancer Moonshot took some exciting steps forward during a day of action that engaged more than 6,000 individuals across the nation. As Greg Simon, the executive director of the Moonshot taskforce, framed it, the moonshot is designed to “invoke systems change in the way we approach cancer.” Pursuing the goal of faster progress from a systems perspective is important, not only because it has led to promising new cross-sector, cross-functional collaborations (e.g. an Oncology Center of Excellence at FDA, new public-private partnerships), but because it may help seed a much needed change in mindset among policymakers committed to faster medical progress. There is a...
Dear Research Advocate: As we grieve the worst mass shooting in U.S. history, the spectre of more to come is deeply troubling. If there were ever a time for action by our elected officials, surely this is it. Yesterday, Senator Chris Murphy (D-CT) took to the Senate floor in a nearly 15 hour filibuster to demand action on gun reform, which ended in Republican leadership agreeing to a vote on two pieces of legislation related to gun sales. Senator Murphy was joined by many of his colleagues, including Senator Richard Durbin (D-IL), who said that the American Medical Association’s declaration of gun violence as a public health crisis is “historic,” entering their press release into the record...

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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