federal funding

Health care has always fascinated me. Florence Nightingale was my first hero and I was probably about eight when I started reading books on the bubonic plague for fun; but what fascinated me most was the experiences my family and I had with health care. As a high-level gymnast, I was fortunate to receive comprehensive health care from a very young age. My sports medicine doctor prescribed more than pain relievers and ace bandages. He prescribed strength and conditioning exercises, diet modifications, sports psychologists and even tricks for falling asleep at night. Outside of sports medicine, I did not always observe this level of care. Most notably, when I was 13 I accompanied my mom to a...
At the Alzheimer’s Association, we launched a bold campaign titled “The First Survivor.” The ad shares our unwavering vision of achieving a goal that is not yet possible – having someone survive Alzheimer’s disease. Perhaps you’ve seen it. The ad describes a future state – but one that can’t come soon enough for the Alzheimer’s Association or the 5.5 million Americans living with the disease and their families. Today though, Alzheimer’s is fatal. There are no survivors. It is the sixth leading cause of death in the U.S. and the only leading cause that cannot be prevented, cured or even slowed. Since 2000, deaths from Alzheimer’s disease have increased 89 percent; while deaths associated...
The American Association for Cancer Research (AACR) has released the annual Cancer Progress Report , highlighting advances in cancer research, as well as advocating for sustained and robust funding for federal health agencies. AACR also hosted a congressional briefing on the progress report on Wednesday, September 21 to bring to Congress’ attention the importance of funding for research and emphasized patient involvement in moving research forward. Patient participation in clinical trials is important not only to test the efficacy of cancer drugs, but also to further the precision medicine initiative that aims to individualize cancer treatment based on each patient’s genetic code and...
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...
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), part of the National Institutes of Health (NIH), recently released a new report, the Action Plan for Lupus Research to assess opportunities for increasing scientific understanding of lupus, which will ultimately lead to safer and more effective treatments and, eventually, curative strategies. The report reflects the current need and gap in lupus research for helping to improve upon a basic understanding of the disease and to identify targets for advancing lupus drug development. Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose...

Sidebar Quote

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