Tag Archives: Harry Johns

A Weekly Advocacy Message from Research!America: First things first

Dear Research Advocate:

Washington isn’t ignoring research; far from it. Legislation was recently signed into law that allows appropriators to reallocate federal funding from the Republican and Democratic conventions to children’s health research; proposals have been introduced that could ultimately provide supplemental federal funding streams for the National Institutes of Health (NIH), the Centers of Disease Control and Prevention (CDC), and several other health research programs; and some Members of Congress have once again launched an attack on the National Science Foundation, demonizing certain projects as a means of casting doubt on scientific freedom. Unless you’re playing Jeopardy!, answers do not precede questions. Science without freedom is not science. More on that in future letters.

Washington isn’t ignoring research, but the spotlight keeps missing the most pressing question: Will Congress do something now to accelerate medical progress, or will FY15 mark another year of neglect?

The NIH budget is lower today than it was in 2012. How have we fallen so far behind? Is it no longer important to conquer diseases that kill children, to do more for wounded warriors, to stop devastating conditions like Alzheimer’s and cancer? Continue reading →

President Obama announces BRAIN Initiative

President Barack Obama unveiled the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative on Tuesday. Described in a White House press release as one of the administration’s “Grand Challenges,” the goal of the initiative is to bring private and public sector research together to accelerate the development and application of technology and research into the function of complex neural networks. President Obama laid the ground work for today’s announcement during his State of the Union address in January, calling for an increased investment in research to achieve “a level of research and development not seen since the height of the space race.” Continue reading →

One in three seniors dies with Alzheimer’s or dementia

A new report from the Alzheimer’s Association reveals that one in three seniors suffer from some form of dementia or Alzheimer’s by their death. Deaths attributed to Alzheimer’s and dementia have increased 68% from 2000 to 2010.

Harry Johns, president and CEO of the Alzheimer’s Association and Research!America Board member, said in an Alzheimer’s Association release  that “urgent, meaningful action is necessary, particularly as more and more people age into greater risk for developing a disease that today has no cure and no way to slow or stop its progression.”

USA Today reports that the number of people with Alzheimer’s disease is expected to nearly triple by 2050, resulting in an increasing burden on medical costs and caregivers. Currently, there is no way to prevent or slow the progression of Alzheimer’s or other types of dementia.

With growing health care costs consuming the federal budget, policy makers are considering ways to reduce the cost of Medicare and Medicaid. The Alzheimer’s Association predicts that the direct cost of caring for individuals with Alzheimer’s will total more than $200 billion in 2013 alone, with nearly $150 billion of that spending expected to come from Medicare and Medicaid. Increased investments in medical and health research will help improve the treatment and prevention of dementia and Alzheimer’s disease.

“We have wanted to see a $2 billion commitment to research, because we’ve seen what has happened in diseases like HIV/AIDS when a big financial commitment is made,” said Maria Carrillo, PhD, vice president of medical and scientific affairs at the Alzheimer’s Association, in the article. Over the same 10-year period that saw an increase in Alzheimer’s deaths, HIV/AIDS related deaths decreased 42%, according to the Alzheimer’s Association study.

This report shows that now is not the time to cut back on America’s investment in biomedical and health research. Contact your representatives and urge them to make research for health a higher national priority.

Research!America Honors Trailblazers In Health Research Advocacy

Diane Rehm; John F. Crowley; Dr. John Mendelsohn; Dr. Mark Rosenberg;and California Institute for Regenerative Medicine to Receive 2013 Research!America Advocacy Awards

WASHINGTON-October 2, 2012Research!America’s 17th annual Advocacy Awards will convene leaders from government, academia, industry and health advocacy organizations to honor leading medical and health research advocates of our time. The event will take place on the evening of Wednesday, March 13, 2013, at the Andrew W. Mellon Auditorium in Washington, DC.

The 2013 Advocacy Award winners are Diane Rehm, author and host of WAMU 88.5 and NPR’s “The Diane Rehm Show;” John F. Crowley, patient advocate and inspirational entrepreneur, chairman and CEO of Amicus Therapeutics, Inc.; John Mendelsohn, M.D., director, Khalifa Institute for Personalized Cancer Therapy and former president at The University of Texas MD Anderson Cancer Center; Mark Rosenberg, M.D., president and CEO, The Task Force for Global Health; and California Institute for Regenerative Medicine (CIRM). A sixth Advocacy Award winner will be named by Research!America’s Board of Directors in December 2012.

“This year’s awardees embody the spirit of pioneers in advocacy, setting high standards for others to follow in achieving a greater awareness and appreciation for research to improve health,” said Mary Woolley, president and CEO of Research!America.”We applaud their leadership and tenacious dedication to informing and engaging the public.”

“The tireless efforts of these extraordinary individuals have brought hope to people affected by devastating diseases worldwide,” said Harry Johns, Research!America Board member, co-chair of the Advocacy Awards selection committee, and president and CEO of the Alzheimer’s Association  “Their collective achievements have greatly contributed to medical progress and innovation in the U.S. and abroad.”

Diane Rehm, author and host of WAMU 88.5 and NPR’s “The Diane Rehm Show,” will be honored with Research!America’s 2013 Isadore Rosenfeld Award for Impact on Public Opinion for emphasizing the value of research and increasing the level of awareness among policy makers and the public of medical conditions such as traumatic brain injuries, Parkinson’s disease, multiple sclerosis and Alzheimer’s disease. Her show reaches millions of listeners around the world, contributing significantly to public understanding of science and health.

Patient advocate and inspirational entrepreneur John F. Crowley, chairman and CEO of Amicus Therapeutics, Inc., will receive Research!America’s 2013 Gordon and Llura Gund Leadership Award for his outstanding efforts to accelerate new treatments for Pompe disease and other genetic diseases. His dedication led to the discovery of a treatment for Pompe disease, saving the lives of his children, Megan and Patrick. Crowley’s remarkable story and perseverance inspired the movie Extraordinary Measures starring Harrison Ford and Brendan Fraser.

John Mendelsohn, M.D., director of the Khalifa Institute for Personalized Cancer Therapy at The University of Texas MD Anderson Cancer Center, will receive Research!America’s 2013 Geoffrey Beene Builders of Science Award for pioneering translational research that has provided the foundation for targeted cancer therapies and for his advocacy for increasing our nation’s support for biomedical research. His leadership of MD Anderson during an expansive period of growth, as well as his own groundbreaking discoveries, have transformed cancer treatment, benefiting thousands of patients worldwide.

Mark Rosenberg, M.D., president and CEO of The Task Force for Global Health, will be honored with Research!America’s 2013 Raymond and Beverly Sackler Award for Sustained National Leadership for advancing injury prevention and road safety, reframing the concept that road traffic crashes are not accidents. His advocacy has increased funding for research and programmatic interventions for injury control and improved traffic safety not only in the U.S. but also in many developing countries.

The California Institute for Regenerative Medicine (CIRM) will receive Research!America’s 2013 Paul G. Rogers Distinguished Organization Advocacy Award for its role in accelerating stem cell research and the potential development of a new generation of promising therapies for previously untreatable human disorders. CIRM-funded discoveries have laid the foundation for a new industry in California and attracted top-level stem cell researchers to the state. Jonathan Thomas, PhD, JD, and chairman of CIRM’s Independent Citizens Oversight Committee, will accept the award on behalf of the organization.

The annual Research!America Advocacy Awards program was established by the Board of Directors in 1996 to honor outstanding advocates for medical, health and scientific research. Recognized individuals and organizations are those whose leadership efforts have been notably effective in advancing our nation’s commitment to research.

Research!America is the nation’s largest nonprofit public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by member organizations that represent the voices of 125 million Americans. Visit www.researchamerica.org.