Tag Archives: Diane Rehm

A Weekly Advocacy Message from Research!America: The innovation imperative: It’s about Max

Dear Research Advocate:

This week, the research advocacy community suffered a tremendous loss. John Rehm, husband of Diane Rehm, passed away Monday. Diane, the host of The Diane Rehm Show on NPR, was honored by Research!America last year for her advocacy with the Isadore Rosenfeld Award for Impact on Public Opinion. Her late husband was a friend and longtime supporter of the Parkinson’s disease community. Our thoughts are with the Rehm family during this difficult time.

As you pursue your advocacy efforts, we hope the newest fact sheet in our series about the human impact of research will prove useful. Max Hasenauer was diagnosed at 22-months-old with X-linked Agammaglobulinemia (XLA). He is alive today because of research that enables him to receive infusions of antibodies every three weeks. While this technique has been life-saving, more research is desperately needed to address the profound challenges Max continues to face. Thank you for helping to ensure that Congressional Offices are seeing these fact sheets. We continue to receive positive feedback from the Hill thanks to your efforts to share the fact sheets broadly. Continue reading →

Advertisements

A Weekly Advocacy Message from Mary Woolley: “Ordinary Americans” at risk

Dear Research Advocate:

Yesterday, I joined Diane Rehm and other guests on her nationally syndicated radio program to discuss how sequestration impacts “ordinary Americans.” I was struck by how deep and distressing the damage is, in so many sectors, including but not limited to our own. Yet somehow the pain is not acute enough to force action.

What strikes me is how low our collective expectations have sunk when it comes to reinvigorating U.S. economic growth and prosperity. Our nation can do better; why don’t we maintain high expectations and hold our elected officials accountable for setting the policy stage to accomplish them? Policy makers should protect discretionary spending, make hard tax and entitlement reform decisions, and commit to policies that foster economic growth and societal (including health) progress. Part of that equation is ample, stable federal funding for medical research and policies that spur private sector medical innovation.

A glimmer of hope for policies creating such an environment can be seen in the Senate agricultural appropriations bill, which provides the FDA an increase of $96 million above FY13 and full access to collected user fees, previously subject to sequestration. The House also provides a modest increase for FDA. But don’t jump for joy; these increases still leave FDA worse off than FY12 and grossly underfunded. That we think of this as an increase is another example of lowered expectations. Meanwhile, the Senate 302(b) allocation levels for FY14 appropriations were adopted today. As expected, the Labor/H budget is significantly higher than the House’s. The Senate and House numbers are so far apart that reconciliation seems unlikely; the odds are still on flat funding minus sequestration. This is a low-expectation, low-outcome scenario, to be sure, and we should all fight against it. If we don’t, “ordinary Americans” will continue to suffer. Continue reading →

Congratulations to our Advocacy Award Winners

Research!America extends our congratulations again to all of our 2013 Advocacy Award winners. The dinner was a wonderful opportunity to thank our supporters and advocates for all of their hard work and recognize leaders in the research and advocacy communities. This year’s Advocacy Award winners were Sen. Richard Burr (R-NC); Sen. Bob Casey (D-PA); John F. Crowley, patient advocate and chairman and CEO of Amicus Therapeutics, Inc.; Mark Rosenberg, MD, president and CEO of The Task Force for Global Health; John Mendelsohn, MD, director of the Khalifa Institute for Personalized Cancer Therapy and former president at The University of Texas MD Anderson Cancer Center; Diane Rehm, host of “The Diane Rehm Show” on NPR; and the California Institute for Regenerative Medicine.

You can read more about the awards and speech by Research!America Chair John Porter in this Roll Call article, in this article about Dr. Rosenberg’s award, and on CIRM’s blog. Also, visit our Facebook page and website to see photos from the awards dinner.

While we applaud our awardees for their efforts, there is still more to be done! As Research!America President and CEO Mary Woolley said in her recent weekly advocacy message, Congress is working on the budget for FY14 and there is still time to contact your representatives and tell them to make research funding a higher priority.

A Weekly Advocacy Message from Mary Woolley: Will Policy Makers let Rome Burn?

Dear Research Advocate,

Today, the Senate is planning to vote on a bipartisan continuing resolution from Sens. Mikulski and Shelby to fund the federal government through the end of the year. The good news is that the bill includes an increase, albeit small ($71 million) in NIH funding; Senator Harkin tried, unsuccessfully, unfortunately, to increase NIH even further, and Senator Durbin worked on an ambitious amendment to add more than $1.5 billion to the NIH budget. We truly appreciate the efforts of all of these champions and the fact that NIH funding was singled out for an increase on a bipartisan basis by the Appropriations Committee. The bad news is that sequestration will wipe out all of these increases. The most likely outcome of the Senate appropriations process is a cut to NIH in the $1.5 billion range. While our community’s herculean advocacy efforts over the last several months are paying off — medical research funding is clearly receiving priority consideration — sequestration is sweeping away our progress. We must continue to fight this policy mistake, with its 10 years of consequences. Take a minute right now to speak out to your representatives. And plan, on April 8, to join the research community at a Rally in D.C. to fight for medical research. Learn more here.

Another amendment offered to the Senate legislation would eliminate political science research at NSF by transferring those dollars to the National Cancer Institute. This amendment sets a dangerous precedent that threatens the integrity and value of research. For years, leaders in Congress from both sides of the aisle, including Research!America’s chairman, former Congressman John Porter, have fought off attempts by Congress to micromanage research. We must fight to keep research decisions off the House and Senate floors and in the hands of scientists and patients.

The House and Senate budget resolutions for FY14, which were also introduced this week, are emblematic of the problem we, as a country, face. The ideological divide is so great that “a grand bargain,” one that will balance the federal budget without decimating our economy and forsaking our determination to defeat disabling and deadly diseases, seems impossible. But Congress and the White House report to the American people. We can and must demand compromise between competing views of the government’s role, and we must stand up for priorities like fighting diseases that threaten our own and future generations. No more political party posturing usurping the governing process. No more across-the-board cuts. FY14 must bring with it pragmatism, prioritization and policy making that puts the country first. Norm Ornstein, resident scholar at the American Enterprise Institute, has penned a compelling op-ed in Roll Call capturing these sentiments.

Switching gears in this very big week, I’d like to thank all who were able to join us for yesterday’s Annual Meeting and Advocacy Awards dinner. We heard truly inspirational remarks from Sens. Richard Burr and Bob Casey, champions of the entire ecosystem behind U.S.-driven medical progress. Our other award winners — John Crowley, Diane Rehm, Dr. John Mendelsohn, Dr. Mark Rosenberg and the California Institute for Regenerative Medicine — are strong advocates for research; we salute their achievements.

Finally, as I announced at our Board meeting, I’m proud that Research!America has entered into a letter of agreement with our sister organizations in Australia, Canada and Sweden to ensure international collaboration by sharing best practices in advocacy for research for health. While our organizations operate in different countries and in distinctly different political environments, we have in common a fundamental commitment to making biomedical and health research a higher global priority.

Sincerely,

Mary Woolley

Research!America’s Advocacy Awards are tonight!

Research!America will honor extraordinary leaders in biomedical and health research advocacy at the 17th Annual Advocacy Awards tonight, March 13, at the Andrew W. Mellon Auditorium in Washington, DC. This year’s Advocacy Award Winners are: Sens. Richard Burr (R-NC) and Bob Casey (D-PA); Diane Rehm, author and host of WAMU 88.5 and NPR’s “The Diane Rehm Show”; John F. Crowley, patient advocate, inspirational entrepreneur, and chairman and CEO of Amicus Therapeutics, Inc.; John Mendelsohn, MD, director, Khalifa Institute for Personalized Cancer Therapy and former president of The University of Texas MD Anderson Cancer Center; Mark Rosenberg, MD, president and CEO, The Task Force for Global Health; and the California Institute for Regenerative Medicine (CIRM).

“The leadership demonstrated by this year’s award recipients has inspired others to push boundaries to improve the health of Americans and maintain our competitive edge in science and innovation,” said Mary Woolley, president and CEO of Research!America. “As advocates, they have contributed significantly to making biomedical and health research a higher national priority.”

Follow Research!America on Twitter (@researchamerica) and visit our Facebook page to get more information about tonight’s event. Look for photos of the Awards Dinner on our Flickr account and video clips on our YouTube page in the coming days.

For more information about the honorees, visit www.researchamerica.org/advocacy_awards and read our latest press release. You can also follow news updates from our honorees. Read Senator Burr’s blog and news from Senator Casey; visit The Diane Rehm Show’s Facebook page; don’t miss the Crowley family’s website and Amicus Therapeutics news; keep up with news about Mendelsohn and the Institute for Personalized Cancer Therapy; Rosenberg and the Task Force for Global Health’s online news room is full of great information; and don’t miss CIRM’s blog.

Research!America Honors Senators Richard Burr and Bob Casey for Strengthening our Nation’s Commitment to Research and Development

Burr and Casey to Receive the Edwin C. Whitehead Award for Medical Research Advocacy at Research!America’s Advocacy Awards Dinner on March 13

Alexandria, Va.February 6, 2013–Sens. Richard Burr (R-NC) and Bob Casey (D-PA) will receive the Edwin C. Whitehead Award for Medical Research Advocacy for their leadership and strong support of federal and private sector medical research and innovation. Sens. Burr and Casey have worked individually and in a bipartisan manner to promote a robust medical research pipeline in the U.S. and ensure patients receive access to new, safe and effective treatments and technologies on a timely basis.

“Senators Burr and Casey exemplify what it means to be a research champion,” said Research!America Chair John Edward Porter. “They have each devoted their energies to ensuring that federal funding and policies are aligned with the goal of accelerating medical progress, from basic research to private sector discovery to timely patient access.  Congressional support for the public and private sector research pipeline is critical to capitalize on recent breakthroughs, maintain our global competitiveness as other nations dramatically ramp up their investments in medical innovation, and fight back against costly, devastating illnesses such as Alzheimer’s, Parkinson’s, heart disease and cancer.”

During their combined 14 years of experience as members of the Senate Health, Education, Labor and Pensions (HELP) Committee, Sens. Burr and Casey have championed legislation to catalyze and improve the research pipeline, and they jointly sponsored a bipartisan letter in support of research conducted by the National Institutes of Health.

Sen. Burr introduced and achieved passage of legislation to establish the National Institute of Biomedical Imaging and Bioengineering (NIBIB), which uses pioneering research to develop new technologies aimed at diagnosing, preventing and treating, among other conditions, breast cancer and spinal cord injuries. He also introduced the Promoting Accountability, Transparency, Innovation, Efficiency and Timeliness at FDA (Patient’s FDA) Act with Sen. Tom Coburn, MD (R-OK) to ensure timely patient access to new drugs and medical devices. Sen. Burr’s Biodefense and Pandemic Vaccine and Drug Development Act of 2005 allows rapid development of certain drugs and vaccines in case of a pandemic or natural disease outbreak.

“I am honored to receive this award, but the people who really deserve it are the hard-working, dedicated and brilliant researchers and scientists in North Carolina and across the country who are making breakthroughs every day that enhance the quality of life and, in many cases, save lives,” said Sen. Burr. “They are the ones we should all be honoring.”

Sen. Casey led a bipartisan group of lawmakers in introducing the Life Sciences Jobs and Investment Act of 2011, legislation that would double the R&D tax credit for life science firms. He also introduced the Creating Hope Act of 2011, a bill to foster the development of research breakthroughs for rare and neglected diseases, such as pediatric cancers and malaria. Last year, he sent a letter to Senate appropriators to inform them of a breakthrough in genetics research and emphasize the importance of maintaining NIH funding.

“I am honored to receive the Edwin C. Whitehead Award for Medical Research Advocacy from Research!America,” said Sen. Casey. ”Pennsylvania is a leader in the area of medical research which is critical to preventing, treating and curing diseases. Medical research is also a field that employs thousands across the state and plays an important role in the Commonwealth’s economy. I believe that it is essential to continue support for medical research because of the potential health benefits for all Americans and the importance of ensuring that our nation remains at the forefront of medical innovation.”

The Whitehead Award will be presented to Sen. Burr and Sen. Casey at Research!America’s 2013 Advocacy Awards dinner on Wednesday, March 13, in Washington, DC. The program honors outstanding individuals and organizations in advocacy for medical, health and scientific research. The Whitehead Award, named in honor of Research!America’s founder, Edwin “Jack” Whitehead, recognizes exemplary leaders, particularly those in public office, who have demonstrated a deep commitment to advancing biomedical and health research as a national priority and who galvanize others in support of science.

Other Advocacy Award winners include 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, MD, director, Khalifa Institute for Personalized Cancer Therapy and former president at The University of Texas MD Anderson Cancer Center; Mark Rosenberg, MD, president and CEO, The Task Force for Global Health; and the California Institute for Regenerative Medicine (CIRM).

About Research!America’s Advocacy Awards Dinner

The annual Research!America Advocacy Awards program was established in 1996 by the Board of Directors 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. This year the awards event will take place on March 13, 2013, at the Andrew W. Mellon Auditorium in Washington, DC. For more information, visit www.researchamerica.org/advocacy_awards.

About Research America

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 representing 125 million Americans. Visit www.researchamerica.org.

###

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.

 ###