Dear Research Advocate: In a terrific op-ed in the Sacramento Bee , Greg Sorensen, MD, CEO of Siemens Healthcare North America and Research!America board member, writes about a young girl, Kayla Saikaly, diagnosed with aplastic anemia at 13-years-old and the life-saving bone marrow transplant she received at Southern California’€™s City of Hope Hospital. FASEB Vice-President elect and Director of the Human Genetics Program at Sanford-Burnham Medical Research Institute, Dr. Hudson Freeze, appeared on a segment of San Diego’€™s U-T TV daily program ’€œThe Roger Hedgecock Show ’€ with Morgan Fischer, an 8-year-old girl with a disorder called hypophosphatasia that severely hinders proper bone...
Research that protects kids and patients is on the chopping-block. Why? Legislation is being developed in the House of Representatives that would severely restrict or eliminate the appropriations funding mechanism for the Agency for Healthcare Research and Quality, the Administration on Children and Families, the National Center for Health Statistics and other programs charged with protecting children and patients. If the legislation passes with no alternate means of keeping this work going, Americans would lose the benefit of research that translates medical progress into safe healthcare, makes sure new medical treatments reach patients in rural as well as urban areas, prevents deadly...
Excerpt of an op-ed by Research!America President and CEO Mary Woolley published in the Huffington Post . Like it or not, we’re in the midst of another election season. As candidates embark on endless rounds of campaign activities to win the hearts and minds of voters, it’s critical that they not neglect, by choice or lack of awareness, a key issue that has tremendous implications for the health and prosperity of Americans: medical research and innovation. Our nation’s research enterprise has endured years of flat federal funding and, more recently, sequestration, the destructive across-the-board federal spending cuts that began in 2013, as well as policies that slow rather than propel...
Dear Research Advocate: Innovation will be the buzzword on Capitol Hill next week as Senate appropriators meet with experts, including National Institutes of Health (NIH) Director Francis Collins and National Science Foundation (NSF) Director France Cordova, for a hearing on April 29, entitled ’€œDriving Innovation through Federal Investments.’€ As Research!America noted in its written testimony , there’€™s actually a two-part question underlying that theme: What is the significance of innovation to Americans? And, implicitly, does the return on our investment justify current or higher levels of spending? When it comes to medical innovation, the short answers are: 1) it bears on longevity...
The price of wasted time is too high The Fiscal Year 2015 Appropriations process marks a period of crucial decisions on how to fund America’€™s top priorities, including combating deadly and disabling disease. The funding allocated to the National Institutes of Health (NIH), coupled with private-sector investment, saves young lives; empowers those with disabilities to maintain productive, fulfilling lives; and is an underappreciated force behind local and national economic growth, our national security and America’€™s status as a global economic and innovation leader. Appropriators can act this year to restore NIH to a growth path consistent with the significance of medical progress to...
Watch backstage interviews with Research!America’€™s 2014 Advocacy Award winners talking about the importance of medical and health research to improve health and save lives. ’€œYou don’€™t have to be a scientist in order to move mountains. People can advocate by running road races, by volunteering, by working towards legislation, it’€™s all essential, the science and all the rest of it. That’€™s the only way we are going to get to a point where we have a healthier nation in the future and it is doable,’€ said Leslie Gordon, MD, PhD, medical director of the Progeria Research Foundation , winner of the 2014 Paul G. Rogers Distinguished Organization Advocacy Award. The other winners — Dr...
On March 25, Research!America submitted testimony to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and related agencies concerning FY15 appropriations for the National Institutes of Health, Centers for Disease Control and Prevention and Agency for Healthcare Research and Quality: The National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Agency for Healthcare Research and Quality (AHRQ) play pivotal roles in combating disabling and deadly health conditions. Moreover, the funding, or lack of it, allocated to these agencies will bear on our nation’s ability to compete in key export markets within...
Dear Research Advocate: Research!America’€™s annual meeting and 25th anniversary Advocacy Awards Dinner were very special. At our annual meeting we heard thoughtful remarks from Rep. David Joyce (R-OH-14) about the importance of research as part of investing in the future of America. Kathy Giusti, founder of the Multiple Myeloma Research Foundation, epitomized the power of patient advocacy, making the seemingly impossible happen through her commitment to overcoming barriers to finding a cure. Our awards dinner showcased the commitment and impact of remarkable champions for science and for medical progress. Congressmen Frank Wolf (R-VA-10) and Chaka Fattah (D-PA-02); Glenn Close, Jessie...
Research!America’s chair, The Honorable John Edward Porter, has been named the 2014 winner of the Public Welfare Medal, given by the National Academy of Sciences. The award recognizes Porter’s decades of advocacy on behalf of scientific and medical research. Established in 1914, the Public Welfare Medal is the most prestigious award given by the Academy. “John Porter’s amazing ability to excite policy makers and the public about the great promise of science and medicine is directly responsible for the support of numerous research projects that are advancing biomedical science and enabling treatment of devastating illnesses,” said National Academy of Sciences President Ralph J. Cicerone, PhD...

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Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor