#CuresNOW

This article is the fifth in a series highlighting the accomplishments of Research!America’s 2017 Advocacy Award honorees who will be saluted at a dinner in Washington, D.C., on March 15. More details can be found here . Senator Lamar Alexander (R-TN) will be receiving Research!America’s Edwin C. Whitehead Award for Medical Research Advocacy , which honors exemplary leaders, particularly those in public office, who have shown a long-standing commitment to advancing health research as a national priority. Alexander has shown a strong commitment to improving the lives of Americans and, as chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, he championed the passage...
Today, Research!America sent a letter to House and Senate leadership in support of the 21 st Century Cures Act, legislation that encourages the discovery, development and delivery of new treatments and cures for patients. A new version of the 21st Century Cures bill (21stCC) has been introduced, with a strong chance that this bipartisan legislation will pass both Houses of Congress, and that President Obama will sign it into law shortly thereafter. Chairman Fred Upton (R-MI-06) has requested that organizations and individuals send letters by Wednesday, November 30 at 1:00 p.m. ET . We encourage advocates to send a letter and voice support for this important legislation. Click here for a...
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...
Dear Research Advocate: Monday’s presidential debate had a promising start when, during her opening remarks, Secretary Clinton listed “innovation and technology” as an investment priority, but neither candidate touched on the need for faster medical progress or a rock solid public health system. Read more on the debate on our Campaign for Cures blog . If you feel so inclined, tweet Mr. Trump (@realDonaldTrump) and Secretary Clinton (@HillaryClinton) and ask them to make use of the next debate to tell Americans what they will do to fight health threats - ongoing like cancer and emerging like Zika - that rob Americans of time, independence and hope. Do the same for vice presidential...
Dear Research Advocate: First, it is not too late to sign up for our webinar, The Microbiome Initiative: A Closer Look , which will take place tomorrow , September 16, from 1:00 to 1:30 ET. I am not surprised that interest is strong in this program, which features Dr. Stefano Bertuzzi, CEO of the American Society for Microbiology. Please join us! I was in New York following the birth of my grandson (Ferdinand, 8 pounds, 14 ounces!) and missed our National Health Research Forum last week; however, I watched the video and the panel discussions were absolutely terrific! From the need for a standing public health emergency fund that grounds threat response in pragmatism rather than politics, to...
The September 2016 Research Advocate is now online . Highlights from this month include: Research!America’s 2016 National Health Research Forum will tackle relevant and cutting-edge issues on medical research and innovation Thursday, September 8, 11:30 a.m. – 3:00 p.m. ET, at the Newseum in Washington, D.C. As policymakers explore ways to modernize our research ecosystem to benefit patients and bring researchers together to work toward national initiatives, experts representing various sectors of the research community will discuss the future of medical progress. September's federal policy agenda-- when members of Congress return to D.C. this month, they face a looming deadline: if no...
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...
“Delivery” has been in the spotlight this week as part of our #CuresNOW advocacy month. The delivery aspect of the discovery-development-delivery research pipeline is broad territory, from the research that informs improvements in our health care delivery system; to connecting patients to the right treatments at the right time, the first time; to creating a platform for new discovery and development to keep the cycle in motion, and the patient foremost in mind. Delivery week has included a blog post with testimonials about living with hydrocephalus, a new fact sheet on chronic kidney disease (CKD) and lots of action on social media -- including Research!America staffers sharing selfies...
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...
In the delivery phase, researchers deploy health services research, health economics research and behavioral research to optimize the delivery of health care, help Americans protect and enhance their individual health, ensure that medical advances reach the right patients in the right settings at the right time, minimize medical errors and in other ways work to maximize the value of medical progress to patients and their loved ones. We hope the final Cures package expands and improves telehealth; recognizes the importance of health services research to improve the delivery of health care; and makes meaningful, positive changes in the lives of patients. Take action! Are you a patient that...

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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