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August 2008 - Posts
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Some time ago I told regular readers about Science Debate 2008. As you know, although I've got my own political opinions, and although this is a personal blog, because right now it's sort of an HPS defacto news site, I don't blog about my own take on politics. I don't want us to fight about things that have nothing to do with finding the cure. But, this is different. The HPS Network signed onto this project. The idea is simply to raise the profile of issues related to science in the presidential debate by getting the candidates to take a public stand on them. At least then no matter what your personal opinion - when it comes to the science issues that are near and dear to all of us, you'll know where the candidates stand. I'll post McCain's responses when I get them. This is a bit long and I would have just sent those interested to the Web site, however, it was very hard to read in light blue. I thought many of you would find it easier to read here in large print.
The Story
In November, 2007, a small group of six citizens - two screenwriters, a physicist, a marine biologist, a philosopher and a science journalist - began working to restore science and innovation to America’s political dialogue. They called themselves Science Debate 2008, and they called for a presidential debate on science. The call tapped a wellspring of concern over the state of American science.
Within weeks, more than 38,000 scientists, engineers, and other concerned Americans signed on, including nearly every major American science organization, dozens of Nobel laureates, elected officials and business leaders, and the presidents of over 100 major American universities. See who here. Among other things, these signers submitted over 3,400 questions they want the candidates for President to answer about science and the future of America.
The Process
Beginning with these 3,400 questions, Science Debate 2008 worked with the leading organizations listed to craft the top 14 questions the candidates should answer. These questions are broad enough to allow for wide variations in response, but they are specific enough to help guide the discussion toward many of the largest and most important unresolved challenges currently facing the United States.
The Questions and Answers
Barack Obama's answers appear below. John McCain has said he will also answer the questions.
Barack Obama's answers to the top 14 science questions facing America
1. Innovation. Science and technology have been responsible for half of the growth of the American economy since WWII. But several recent reports question America’s continued leadership in these vital areas. What policies will you support to ensure that America remains the world leader in innovation?
Ensuring that the U.S. continues to lead the world in science and technology will be a central priority for my administration. Our talent for innovation is still the envy of the world, but we face unprecedented challenges that demand new approaches. For example, the U.S. annually imports $53 billion more in advanced technology products than we export. China is now the world’s number one high technology exporter. This competitive situation may only worsen over time because the number of U.S. students pursuing technical careers is declining. The U.S. ranks 17th among developed nations in the proportion of college students receiving degrees in science or engineering; we were in third place thirty years ago.
My administration will increase funding for basic research in physical and life sciences, mathematics, and engineering at a rate that would double basic research budgets over the next decade. We will increase research grants for early-career researchers to keep young scientists entering these fields. We will increase support for high-risk, high-payoff research portfolios at our science agencies. And we will invest in the breakthrough research we need to meet our energy challenges and to transform our defense programs.
A vigorous research and development program depends on encouraging talented people to enter science, technology, engineering, and mathematics (STEM) and giving them the support they need to reach their potential. My administration will work to guarantee to students access to strong science curriculum at all grade levels so they graduate knowing how science works – using hands-on, IT-enhanced education. As president, I will launch a Service Scholarship program that pays undergraduate or graduate teaching education costs for those who commit to teaching in a high-need school, and I will prioritize math and science teachers. Additionally, my proposal to create Teacher Residency Academies will also add 30,000 new teachers to high-need schools – training thousands of science and math teachers. I will also expand access to higher education, work to draw more of these students into science and engineering, and increase National Science Foundation (NSF) graduate fellowships. My proposals for providing broadband Internet connections for all Americans across the country will help ensure that more students are able to bolster their STEM achievement.
Progress in science and technology must be backed with programs ensuring that U.S. businesses have strong incentives to convert advances quickly into new business opportunities and jobs. To do this, my administration will make the R&D tax credit permanent.
2. Climate Change. The Earth’s climate is changing and there is concern about the potentially adverse effects of these changes on life on the planet. What is your position on the following measures that have been proposed to address global climate change—a cap-and-trade system, a carbon tax, increased fuel-economy standards, or research? Are there other policies you would support?
There can no longer be any doubt that human activities are influencing the global climate and we must react quickly and effectively. First, the U.S. must get off the sidelines and take long-overdue action here at home to reduce our own greenhouse gas emissions. We must also take a leadership role in designing technologies that allow us to enjoy a growing, prosperous economy while reducing greenhouse gas emissions by 80 percent below 1990 levels by 2050. With the right incentives, I'm convinced that American ingenuity can do this, and in the process make American businesses more productive, create jobs, and make America’s buildings and vehicles safer and more attractive. This is a global problem. U.S. leadership is essential but solutions will require contributions from all parts of the world—particularly the rest of the world’s major emitters: China, Europe, and India. Specifically, I will implement a market-based cap-and-trade system to reduce carbon emissions by the amount scientists say is necessary: 80 percent below 1990 levels by 2050. I will start reducing emissions immediately by establishing strong annual reduction targets with an intermediate goal of reducing emissions to 1990 levels by 2020. A cap- and-trade program draws on the power of the marketplace to reduce emissions in a cost- effective and flexible way. I will require all pollution credits to be auctioned. I will restore U.S. leadership in strategies for combating climate change and work closely with the international community. We will re-engage with the U.N. Framework Convention on Climate Change, the main international forum dedicated to addressing the climate change problem. In addition I will create a Global Energy Forum—based on the G8+5, which includes all G-8 members plus Brazil, China, India, Mexico and South Africa—comprising the largest energy consuming nations from both the developed and developing world. This forum would focus exclusively on global energy and environmental issues. I will also create a Technology Transfer Program dedicated to exporting climate-friendly technologies, including green buildings, clean coal and advanced automobiles, to developing countries to help them combat climate change.
3. Energy. Many policymakers and scientists say energy security and sustainability are major problems facing the United States this century. What policies would you support to meet demand for energy while ensuring an economically and environmentally sustainable future?
America's challenges in providing secure, affordable energy while addressing climate change mean that we must make much more efficient use of energy and begin to rely on new energy sources that eliminate or greatly reduce greenhouse gas emissions. My programs focus both on a greatly expanded program of federally funded energy research and development and on policies designed to speed the adoption of innovative energy technologies and stimulate private innovation. First, I have proposed programs that, taken together, will increase federal investment in the clean energy research, development, and deployment to $150 billion over ten years. This research will cover:
• Basic research to develop alternative fuels and chemicals;
• Equipment and designs that can greatly reduce energy use in residential and commercial buildings – both new and existing;
• New vehicle technologies capable of significantly reducing our oil consumption;
• Advanced energy storage and transmission that would greatly help the economics of new electric-generating technologies and plug-in hybrids;
• Technologies for capturing and sequestering greenhouse gases produced by coal plants; and
• A new generation of nuclear electric technologies that address cost, safety, waste disposal, and proliferation risks.
I will also work closely with utilities to introduce a digital smart grid that can optimize the overall efficiency of the nation's electric utility system, by managing demand and making effective use of renewable energy and energy storage. Second, it is essential that we create a strong, predictable market for energy innovations with concrete goals that speed introduction of innovative products and provide a strong incentive for private R&D investment in energy technologies. These concrete goals include:
• Increasing new building efficiency by 50 percent and existing building efficiency by 25 percent over the next decade, and taking other steps that will reduce the energy intensity of our economy 50 percent by 2030;
• Increasing fuel economy standards 4 percent per year and providing loan guarantees for domestic auto plants and parts manufacturers to build new fuel- efficient cars domestically;
• Extending the Production Tax Credit for five years and creating a federal Renewable Portfolio Standard that will require that 10 percent of American electricity be derived from renewable sources by 2012, and 25 percent by 2025; and
• Ensuring that regulations and incentives in all federal agencies support the national energy and environmental goals in ways that encourage innovation and ingenuity.
I will also encourage communities around the nation to design and build sustainable communities that cut energy use with walkable community designs and expanded investment in mass transit.
4. Education. A comparison of 15-year-olds in 30 wealthy nations found that average science scores among U.S. students ranked 17th, while average U.S. math scores ranked 24th. What role do you think the federal government should play in preparing K-12 students for the science and technology driven 21st Century?
All American citizens need high quality STEM education that inspires them to know more about the world around them, engages them in exploring challenging questions, and involves them in high quality intellectual work. STEM education is no longer only for those pursuing STEM careers; it should enable all citizens to solve problems, collaborate, weigh evidence, and communicate ideas. I will work to ensure that all Americans, including those in traditionally underrepresented groups, have the knowledge and skills they need to engage in society, innovate in our world, and compete in the global economy. I will support research to understand the strategies and mechanisms that bring lasting improvements to STEM education and ensure that promising practices are widely shared. This includes encouraging the development of cutting edge STEM instructional materials and technologies, and working with educators to ensure that assessments measure the range of knowledge and skills needed for the 21st Century. I will bring coherency to STEM education by increasing coordination of federal STEM education programs and facilitating cooperation among state efforts. I recently introduced the "Enhancing Science, Technology, Engineering and Math Education Act of 2008" that would establish a STEM Education Committee within the Office of Science and Technology Policy (OSTP) to coordinate the efforts of federal agencies engaged in STEM education, consolidate the STEM education initiatives that exist within the Department of Education under the direction of an Office of STEM Education, and create a State Consortium for STEM Education. These reforms will strengthen interagency coordination at the federal level, encourage collaboration on common content standards and assessments for STEM education at the state and local levels, and provide a mechanism for sharing the latest innovations and practices in STEM education with educators. I also recently sponsored an amendment, which became law, to the America Competes Act that established a competitive state grant program to support summer learning opportunities with curricula that emphasize mathematics and problem solving. My education plan is built on the recognition that teachers play a critical role in student learning and achievement. My administration will work closely with states and local communities to ensure that we recruit math and science graduates to the teaching profession. Through Teacher Service Scholarships, a Teacher Residency Program, and Career Ladders, I will transform the teaching profession from one that has too many underpaid and insufficiently qualified teachers to one that attracts the best STEM teaching talent for our schools. We cannot strengthen STEM education without addressing the broader challenges of improving American education and other priority issues. In addition to a focus on high quality teachers, my comprehensive plan addresses the needs of our most at-risk children, focuses on strong school leaders, and enlists parent and community support. My proposals for a comprehensive “zero to five” program will ensure that children enter school ready to learn. And when they finish school, I will make sure that through the new $4,000 American Opportunity Tax Credit, they will have access to affordable higher education that will provide them with the science fluency they need to be leaders in STEM fields and across broad sectors of our society.
5. National Security. Science and technology are at the core of national security like never before. What is your view of how science and technology can best be used to ensure national security and where should we put our focus?
Technology leadership is key to our national security. It’s essential to create a coherent new defense technology strategy to meet the kinds of threats we may face—asymmetric conflicts, urban operations, peacekeeping missions, and cyber, bio, and proliferation threats, as well as new kinds of symmetric threats. When Sputnik was launched in 1957, President Eisenhower used the event as a call to arms for Americans to help secure our country and to increase the number of students studying math and science via the National Defense Education Act. That educational base not only improved our national security and space programs but also led to our economic growth and innovation over the second half of the century. Our nation is again hearing a threatening “ping” in the distance, this time not from a single satellite in space but instead from threats that range from asymmetric conflicts to cyber attacks, biological terror and nuclear proliferation. I will lead the nation to be prepared to meet this 21st- century challenge by investing again in math and science education, which is vital to protecting our national security and our competitiveness. As president I will also ensure that our defense, homeland security, and intelligence agencies have the strong research leadership needed to revitalize our defense research activities and achieve breakthrough science that can be quickly converted into new capabilities for our security. This year, I was encouraged to see the Department of Defense (DoD) requested a sharp increase in the basic research budget for breakthrough technologies. More is needed. My administration will put basic defense research on a path to double and will assure strong funding for investments in DoD’s applied research programs. We will enhance the connections between defense researchers and their war-fighting counterparts. And, we will strengthen defense research management so that our most innovative minds are working on our most pressing defense problems. A strong research program can also lower procurement costs by reducing technical risks and increasing reliability and performance. Renewing DARPA (the Defense Advanced Research Projects Agency) will be a key part of this strategy. My administration will build a strong and more productive research program in the Department of Homeland Security (DHS) that will include critical work on cyber and bio security. Because existing programs have been plagued by management problems, we will bring a renewal of talent, organization, and focus, seeking support from our universities, companies, and labs. Another critical role for R&D in national security is energy. Our petroleum dependence continually threatens our security, and my proposals for accelerating new alternative energy technologies will be an important part of my national security R&D agenda. Finally, we will act to reverse the erosion of the U.S. manufacturing base - which could jeopardize our technical superiority. We need to continue to develop the finest defense systems in the world. But, we are losing domestic production capability for critical defense components and systems. I will implement the recommendations of the Defense Science Board on defense manufacturing, strengthen efforts at DoD’s Manufacturing Technology program, and invest in innovative manufacturing sciences and processes to cut manufacturing costs and increase efficiency.
6. Pandemics and Biosecurity. Some estimates suggest that if H5N1 Avian Flu becomes a pandemic it could kill more than 300 million people. In an era of constant and rapid international travel, what steps should the United States take to protect our population from global pandemics or deliberate biological attacks?
It’s time for a comprehensive effort to tackle bio-terror. We know that the successful deployment of a biological weapon—whether it is sprayed into our cities or spread through our food supply—could kill tens of thousands of Americans and deal a crushing blow to our economy. Overseas, I will launch a Shared Security Partnership that invests $5 billion over 3 years to forge an international intelligence and law enforcement infrastructure to take down terrorist networks. I will also strengthen U.S. intelligence collection overseas to identify and interdict would-be bioterrorists before they strike and expand the U.S. government’s bioforensics program for tracking the source of any biological weapon. I will work with the international community to make any use of disease as a weapon declared a crime against humanity. And to ensure our country is prepared should such an event occur, we must provide our public health system across the country with the surge capacity to confront a crisis and improve our ability to cope with infectious diseases. I will invest in new vaccines and technology to detect attacks and to trace them to their origin, so that we can react in a timely fashion. I have pledged to invest $10 billion per year over the next 5 years in electronic health information systems to not only improve routine health care, but also ensure that these systems will give health officials the crucial information they need to deploy resources and save lives in an emergency. I will help hospitals form collaborative networks to deal with sudden surges in patients and will ensure that the U.S. has adequate supplies of medicines, vaccines, and diagnostic tests and can get these vital products into the hands of those who need them. We also have to expand local and state programs to ensure that they have the resources to respond to these disasters. I will work to strengthen the federal government’s partnership with local and state governments on these issues by improving the mechanisms for clear communication, eliminating redundant programs, and building on the key strengths possessed by each level of government. I introduced legislation which would have provided funding for programs in order to enhance emergency care systems throughout the country. I will build on America’s unparalleled talent and advantage in STEM fields and the powerful insights into biological systems that are emerging to create new drugs, vaccines, and diagnostic tests and to manufacture these vital products much more quickly and efficiently than is now possible. Unfortunately, the Bush administration has failed to take full advantage of the Bioshield initiative. Because of the unpredictability of the mode of biological attack, I will stress the need for broad-gauged vaccines and drugs and for more agile and responsive drug development and production systems. This effort will strengthen the U.S. biotech and pharmaceutical industry and create high-wage jobs.
7. Genetics research. The field of genetics has the potential to improve human health and nutrition, but many people are concerned about the effects of genetic modification both in humans and in agriculture. What is the right policy balance between the benefits of genetic advances and their potential risks?
The progress that has occurred in genetics over the past half century has been remarkable—from the discovery of DNA’s double helix structure in 1953 to the recent deciphering of all three billion letters of the human genome. New knowledge about genes is already transforming medicine and agriculture and has the potential to change other fields, including energy and environmental sciences and information technology. I also recognize that the power of modern genetics has raised important ethical, legal, and social issues that require careful study. For example, new developments in human genetics allow individuals to be informed about their risks of various diseases; such information can be useful for diagnosing and treating disease, but it can also be misused by employers or insurers to discriminate. For this reason, I have been a long-time supporter of the recently passed Genetic Information Non-Discrimination Act. In addition, concerned about the premature introduction of genetic testing into the public domain without appropriate oversight, I introduced the Genomics and Personalized Medicine Act of 2007 aimed at ensuring the safety and accuracy of such testing. Advances in the genetic engineering of plants have provided enormous benefits to American farmers. I believe that we can continue to modify plants safely with new genetic methods, abetted by stringent tests for environmental and health effects and by stronger regulatory oversight guided by the best available scientific advice. Disease treatment and identification is likewise being transformed by modern genetics. Recombinant DNA (rDNA) technology has produced a number of products such as human growth hormone or insulin or other complicated proteins that are known to be involved in bone metabolism, immune response, and tissue repair. The promise of rDNA is its ability to sidestep potentially harmful intermediaries that could have a pathogenic effect. Some forms of gene therapy-replacing faulty genes with functional copies-in comparison have encountered safety issues that arise from how the functional gene is delivered. As a result, the NIH established the Recombinant DNA Advisory Committee, which now provides advice and guidance on human gene therapy as well as other ethical concerns or potential abuse of rDNA technology. Until we are equipped to ascertain the safety of such methods, I will continue to support the activities and recommendations of the Recombinant DNA Advisory Committee.
8. Stem cells. Stem cell research advocates say it may successfully lead to treatments for many chronic diseases and injuries, saving lives, but opponents argue that using embryos as a source for stem cells destroys human life. What is your position on government regulation and funding of stem cell research?
Stem cell research holds the promise of improving our lives in at least three ways—by substituting normal cells for damaged cells to treat diabetes, Parkinson’s disease, spinal cord injury, heart failure and other disorders; by providing scientists with safe and convenient models of disease for drug development; and by helping to understand fundamental aspects of normal development and cell dysfunction. For these reasons, I strongly support expanding research on stem cells. I believe that the restrictions that President Bush has placed on funding of human embryonic stem cell research have handcuffed our scientists and hindered our ability to compete with other nations. As president, I will lift the current administration’s ban on federal funding of research on embryonic stem cell lines created after August 9, 2001 through executive order, and I will ensure that all research on stem cells is conducted ethically and with rigorous oversight. I recognize that some people object to government support of research that requires cells to be harvested from human embryos. However, hundreds of thousands of embryos stored in the U.S. in in-vitro fertilization clinics will not be used for reproductive purposes, and will eventually be destroyed. I believe that it is ethical to use these extra embryos for research that could save lives when they are freely donated for that express purpose. I am also aware that there have been suggestions that human stem cells of various types, derived from sources other than embryos, make the use of embryonic stem cells unnecessary. I don’t agree. While adult stem cells, such as those harvested from blood or bone marrow, are already used for treatment of some diseases, they do not have the versatility of embryonic stem cells and cannot replace them. Recent discoveries indicate that adult skin cells can be reprogrammed to behave like stem cells; these are exciting findings that might in the future lead to an alternate source of highly versatile stem cells. However, embryonic stem cells remain the “gold standard,” and studies of all types of stem cells should continue in parallel for the foreseeable future. Rather than restrict the funding of such research, I favor responsible oversight of it, in accord with recent reports from the National Research Council. Recommendations from the NRC reports are already being followed by institutions that conduct human embryonic stem cell research with funds from a variety of sources. An expanded, federally-supported stem cell research program will encourage talented U.S. scientists to engage in this important new field, will allow more effective oversight, and will signal to other countries our commitment to compete in this exciting area of medical research.
9. Ocean Health. Scientists estimate that some 75 percent of the world’s fisheries are in serious decline and habitats around the world like coral reefs are seriously threatened. What steps, if any, should the United States take during your presidency to protect ocean health?
Oceans are crucial to the earth's ecosystem and to all Americans because they drive global weather patterns, feed our people and are a major source of employment for fisheries and recreation. As president, I will commit my administration to develop the kind of strong, integrated, well-managed program of ocean stewardship that is essential to sustain a healthy marine environment. Global climate change could have catastrophic effects on ocean ecologies. Protection of the oceans is one of the many reasons I have developed an ambitious plan to reduce U.S. emissions of greenhouse gases 80 percent below 1990 by 2050. We need to enhance our understanding of the effect of climate change on oceans and the effect of acidification on marine life through expanded research programs at NASA, the National Oceanic and Atmospheric Administration (NOAA), the National Science Foundation (NSF), and the U.S. Geological Survey (USGS). I will propel the U.S. into a leadership position in marine stewardship and climate change research. Stronger collaboration across U.S. scientific agencies and internationally is needed in basic research and for designing mitigation strategies to reverse or offset the damage being done to oceans and coastal areas. The oceans are a global resource and a global responsibility for which the U.S. can and should take a more active role. I will work actively to ensure that the U.S. ratifies the Law of the Sea Convention – an agreement supported by more than 150 countries that will protect our economic and security interests while providing an important international collaboration to protect the oceans and its resources. My administration will also strengthen regional and bilateral research and oceans preservation efforts with other Gulf Coast nations. Our coastal areas and beaches are American treasures and are among our favorite places to live and visit. I will work to reauthorize the Coastal Zone Management Act in ways that strengthen the collaboration between federal agencies and state and local organizations. The National Marine Sanctuaries and the Oceans and Human Health Acts provide essential protection for ocean resources and support the research needed to implement a comprehensive ocean policy. These programs will be strengthened and reauthorized.
10. Water. Thirty-nine states expect some level of water shortage over the next decade, and scientific studies suggest that a majority of our water resources are at risk. What policies would you support to meet demand for water resources?
Solutions to this critical problem will require close collaboration between federal, state, and local governments and the people and businesses affected. First, prices and policies must be set in a ways that give everyone a clear incentive to use water efficiently and avoid waste. Regulations affecting water use in appliances and incentives to shift from irrigated lawns to "water smart" landscapes are examples. Second, information, training, and, in some cases, economic assistance should be provided to farms and businesses that will need to shift to more efficient water practices. Many communities are offering kits to help businesses and homeowners audit their water use and find ways to reduce use. These should be evaluated, with the most successful programs expanded to other states and regions. I will establish a national plan to help high-growth regions with the challenges of managing their water supplies. In addition, it is also critical that we undertake a concerted program of research, development, and testing of new technologies that can reduce water use.
11. Space. The study of Earth from space can yield important information about climate change; focus on the cosmos can advance our understanding of the universe; and manned space travel can help us inspire new generations of youth to go into science. Can we afford all of them? How would you prioritize space in your administration?
As president, I will establish a robust and balanced civilian space program. Under my administration, NASA not only will inspire the world with both human and robotic space exploration, but also will again lead in confronting the challenges we face here on Earth, including global climate change, energy independence, and aeronautics research. In achieving this vision, I will reach out to include international partners and to engage the private sector to amplify NASA’s reach. I believe that a revitalized NASA can help America maintain its innovation edge and contribute to American economic growth. There is currently no organizational authority in the federal government with a sufficiently broad mandate to oversee a comprehensive and integrated strategy and policy dealing with all aspects of the government’s space-related programs, including those being managed by NASA, the Department of Defense, the National Reconnaissance Office, the Department of Commerce, the Department of Transportation, and other federal agencies. This wasn’t always the case. Between 1958 and 1973, the National Aeronautics and Space Council oversaw the entire space arena for four presidents; the Council was briefly revived from 1989 to 1992. I will re-establish this Council reporting to the president. It will oversee and coordinate civilian, military, commercial, and national security space activities. It will solicit public participation, engage the international community, and work toward a 21st century vision of space that constantly pushes the envelope on new technologies as it pursues a balanced national portfolio that expands our reach into the heavens and improves life here on Earth.
12. Scientific Integrity. Many government scientists report political interference in their job. Is it acceptable for elected officials to hold back or alter scientific reports if they conflict with their own views, and how will you balance scientific information with politics and personal beliefs in your decision-making?
Scientific and technological information is of growing importance to a range of issues. I believe such information must be expert and uncolored by ideology. I will restore the basic principle that government decisions should be based on the best- available, scientifically-valid evidence and not on the ideological predispositions of agency officials or political appointees. More broadly, I am committed to creating a transparent and connected democracy, using cutting-edge technologies to provide a new level of transparency, accountability, and participation for America’s citizens. Policies must be determined using a process that builds on the long tradition of open debate that has characterized progress in science, including review by individuals who might bring new information or contrasting views. I have already established an impressive team of science advisors, including several Nobel Laureates, who are helping me to shape a robust science agenda for my administration. In addition I will:
• Appoint individuals with strong science and technology backgrounds and unquestioned reputations for integrity and objectivity to the growing number of senior management positions where decisions must incorporate science and technology advice. These positions will be filled promptly with ethical, highly qualified individuals on a non-partisan basis;
• Establish the nation’s first Chief Technology Officer (CTO) to ensure that our government and all its agencies have the right infrastructure, policies and services for the 21st century. The CTO will lead an interagency effort on best-in-class technologies, sharing of best practices, and safeguarding of our networks;
• Strengthen the role of the President’s Council of Advisors on Science and Technology (PCAST) by appointing experts who are charged to provide independent advice on critical issues of science and technology. The PCAST will once again be advisory to the president; and
• Restore the science integrity of government and restore transparency of decision- making by issuing an Executive Order establishing clear guidelines for the review and release of government publications, guaranteeing that results are released in a timely manner and not distorted by the ideological biases of political appointees. I will strengthen protection for “whistle blowers” who report abuses of these processes.
13. Research. For many years, Congress has recognized the importance of science and engineering research to realizing our national goals. Given that the next Congress will likely face spending constraints, what priority would you give to investment in basic research in upcoming budgets?
Federally supported basic research, aimed at understanding many features of nature— from the size of the universe to subatomic particles, from the chemical reactions that support a living cell to interactions that sustain ecosystems—has been an essential feature of American life for over fifty years. While the outcomes of specific projects are never predictable, basic research has been a reliable source of new knowledge that has fueled important developments in fields ranging from telecommunications to medicine, yielding remarkable rates of economic return and ensuring American leadership in industry, military power, and higher education. I believe that continued investment in fundamental research is essential for ensuring healthier lives, better sources of energy, superior military capacity, and high-wage jobs for our nation’s future. Yet, today, we are clearly under-investing in research across the spectrum of scientific and engineering disciplines. Federal support for the physical sciences and engineering has been declining as a fraction of GDP for decades, and, after a period of growth of the life sciences, the NIH budget has been steadily losing buying power for the past six years. As a result, our science agencies are often able to support no more than one in ten proposals that they receive, arresting the careers of our young scientists and blocking our ability to pursue many remarkable recent advances. Furthermore, in this environment, scientists are less likely to pursue the risky research that may lead to the most important breakthroughs. Finally, we are reducing support for science at a time when many other nations are increasing it, a situation that already threatens our leadership in many critical areas of science. This situation is unacceptable. As president, I will increase funding for basic research in physical and life sciences, mathematics, and engineering at a rate that would double basic research budgets over the next decade. Sustained and predictable increases in research funding will allow the United States to accomplish a great deal. First, we can expand the frontiers of human knowledge. Second, we can provide greater support for high-risk, high-return research and for young scientists at the beginning of their careers. Third, we can harness science and technology to address the “grand challenges” of the 21st century: energy, health, food and water, national security, information technology, and manufacturing capacity.
14. Health. Americans are increasingly concerned with the cost, quality and availability of health care. How do you see science, research and technology contributing to improved health and quality of life?
Americans have good reasons to be proud of the extraordinary role that medical science has had in combating disease, here and throughout the world, over the past century. Work sponsored by the National Institutes of Health (NIH), other government agencies, and our pharmaceutical and biotechnology industries has produced many vaccines, drugs, and hormones that have improved the quality of life, extended life expectancy, and reduced the dire consequences of many serious illnesses and disabilities. These advances include methods for preventing and treating coronary artery disease and stroke, which have reduced mortality rates by two-thirds; new drugs and antibodies that allow us to effectively treat certain cancers; anti-viral agents that allow most patients with AIDS to control their disease; drugs that often help make severe psychiatric illnesses manageable; and new vaccines that are reducing the incidence of virus-related cancers; and minimally invasive surgery techniques that reduce hospitalizations, complications, and costs. We can expect much more from the exciting biomedical research now underway. For example, we can foresee medical care that will allow physicians to tailor care to individual patients, matching therapies to those most likely to benefit. However, today our citizens have understandable concerns about their ability to afford the care they need, especially when our underlying system of paying for health care is broken. We spend more on health care per capita than people of other countries, yet lower income groups continue to suffer significant disparities in both access to care and health outcomes. Without major changes, costs will continue to increase. Our population is aging, many cancers and chronic disorders remain difficult to treat, and there are continuing threats of new and re-emerging infectious diseases. It's wrong that America's health care system works better for insurance and drug companies than it does for average Americans, who face skyrocketing health care costs. My plan makes health care more secure and affordable by strengthening employer-based coverage, protecting patients' ability to choose their own doctors, and saving families $2,500 dollars by requiring insurance companies to cover prevention and limiting excessive insurance company charges. My plan covers everybody by requiring insurance companies to cover pre-existing conditions, providing tax credits to small businesses and working families, and covering all uninsured children. These are difficult problems, and science and technology can solve only some of them. The effectiveness of medical care can be improved, and its costs can be reduced, by greater emphasis on best practices, electronic medical records, hospital safety, preventive strategies, and improved public health surveillance. The increased investments I support for medical research at the NIH may yield discoveries that reduce the cost of drug development, and we may produce new methods to prevent diseases that are costly to treat. But efforts to control costs also should make greater use of the tools for prevention and clinical management that already exist; enlist more effective participation of the Centers for Disease Control (CDC) and the Food and Drug Administration (FDA), as well as the NIH; and encourage investments in healthcare and health research by the private and not-for-profit sectors. Overall, I am committed to three major tasks that will be necessary to confront widespread concerns about the nation’s health: provision of healthcare plans to all of our citizens; comprehensive efforts to make our health care system more cost-efficient; and continued biomedical research to understand diseases more thoroughly and find better ways to prevent and treat them.
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We’re looking for volunteers. As many of the veterans know, the lung lavage fluid many of us have donated in recent years has really helped to make a dent in HPS research. It’s helped the scientists to start to understand some of what happens at the cellular level with HPS. It’s help them to begin to understand how the fibrosis happens.
So, they need more lavage fluid. We’re looking for volunteers with HPS, any gene type, who would be willing to travel to the NIH and undergo a lung lavage.
I’ve had a lung lavage, so if anyone has any questions about it, I can tell you what it’s like.
To volunteer, you must be over 18. You should be in pretty good health. You can’t be on the Pirfenidone trial or the mult-drug trial. There may be some other medications/health conditions that could exclude you. The reason is that the docs at NIH would never want to do anything that could cause any other health condition to act up. Also some of the meds that HPSers take for other complications could impact the results and that would defeat the point.
Call the HPS Network if you’re interested in volunteering – www.hpsnetwork.org
What is a lung lavage?
Well, on the HPS adults listserv, we joke that it’s all sucking and no plucking.
Essentially, the doctors slide a tube down your throat that has a light and a camera on the end of it. They pass it by the vocal cords into the very upper most part of the lungs. Then they flush saline solution into the lungs to make you cough. When you cough, they suck up the liquid.
That liquid contains cells that you’ve sloughed off when you cough. We don’t take lung biopsies for research because of the bleeding risks – so this is the next best thing.
It sounds pretty horrible – but it’s not that bad really.
The docs will likely pre-treat with DDAVP for bleeding just in case – unless you know that you can’t tolerate DDAVP.
They spray some stuff in the back of your throat, which I thought was the worst part because it tastes like metal.
They tell you that you’re awake for the procedure, but they give you such good drugs you’d never know it. You’re awake enough to cough when they tell you to cough – but you have no memory of the procedure. You sort of wake up out of a haze after it’s done. Then you’re pretty tired the rest of the day.
I’d liken it to a trip to the dentist – I’m not crazy about going but it’s not totally horrible.
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I’ve been wanting to blog about this for about a month now, but I was worried that people might think I was complaining. I was worried they’d start to worry too much about me in ways they shouldn’t. So, I’ve been trying to think of how to explain this for the purposes of recording it as “part of the HPS experience.”
Here it goes.
About a month ago I had the opportunity to attend a national conference of editors and journalists. It was a great opportunity and best of all, for me and my employer, it was right in my back yard. No airfares or hotel fees. Yippee.
In some ways the conference was very exhilarating. There’s nothing like hearing about new ideas and new ways of doing things better to get you excited about your job again. In other ways it was incredibly depressing.
Essentially what I learned (which I already knew) is that, in general, no one respects reporters or editors. Management (in general) sees us as a cost center easily replaced by the next crop of college graduates who all still think journalism is sexy and are willing to work for even less than we, the “veterans” get paid. And that’s not much I’m here to tell you. No one appreciates what 10 years covering the same industry means – that you actually know the industry. No one puts a real value on that.
I’ve been thinking about leaving journalism on and off for a while. I really do love it is the problem – but I don’t feel like what I’m doing is the journalism I went to school to do. And I’m tired of making peanuts. Either I’ve got to make way less to qualify for some help on the medical front, or way more so I can actually afford to take my meds. and have a life too.
But to do anything else would require going back to school. I’d happily go back to school. I loved being a student – but with medical issues and transportation issues logistically, as well as financially, it’s a little easier said than done under present circumstances.
The added problem is that I don’t know what I would want to go back to school to do.
When I studied journalism as an undergrad I had a real passion about it. I had to fight like hell as a blind person in the beginning and the only way I was able to survive that is that I wanted it so badly.
Now, I’m not sure what I want. I feel worn out all the time. Well – what I really want is to work for the HPS Network full time, but that’s not really a possibility right now either.
So, I’m sitting in this meeting and it dawns on me – staying in journalism isn’t going to mean not going back to school. If I’m ever going to be competitive working anywhere else, I need to get my rather large backside moving and learn some new techie skills. I’m going to be outdated very soon. Don’t count on anyone else but me paying for that added expertise – and don’t think that by seeking out more education I’m going to get any recognition in my compensation package.
So, I’m sitting in this meeting and I’m starting to get really stressed out. As editors, our jobs have changed radically in the last decade. We do more than ever with fewer resources for less real world money. We work like dogs. The only way to really shine, to really do something special, is to do it on your own time for nothing.
My blood pressure started to go up. I’ve got to win some incredible prize. I’ve got to be better. I’ve got to go back to school…and if I’m going to spend the money to go back to school, should I really be doing something else? And if so, what? AAAHHHH…..
And then the next panel was a group of equally stressed out editors. They were supposed to be giving time management tips about how to do more with less. I kept waiting for the real tips – the stuff I hadn’t tried yet.
Then a woman on the panel took a deep breath (after several other stressed out editors had asked a number of questions for which no one had a real answer) – she paused and then she said, “You know, at the end of the day I just can’t get it all done. At the end of the day I just re-write my to-do list for the next day, head home, and tell myself – don’t worry, no babies are going to die because you didn’t get it all done today.”
I almost started crying.
That’s it – that’s the big advice? Actually, for journalism, it was good. She was right.
The problem is that’s not my reality.
I go home every night and start what has essentially become my second job. It’s the job I love and look forward to all day. But, when I start it my eyes are already tired. I’ve already worked eight to 12 hours, and then I start in on the most important things I do all day long.
And when I don’t get something done, I do have the sense that people are going to die – maybe not babies – but people who happen to be my friends. They aren’t going to die tomorrow, or even the next day. It isn’t like I’m a doctor.
But no one but those of us in this position understand the urgency of finding the cure. And finding the cure is like traveling the yellow brick road to Oz.
Each yellow brick we walk across puts us that much closer. Sometimes there are distractions along the way that hold us up on the journey, like the wicked witch of the west, but ultimately, if we aren’t traveling over each one of those little yellow bricks – every fundraiser, every outreach effort, every newsletter, every day on the listserv etc. – then we aren’t moving along the yellow brick road. And every day we’re not moving feels like another day that someday somewhere someone is going to pass away and pay the price for that.
It’s made even more frustrating when friends and family don’t get it. They act like I’ve joined a club that you can pick up or put down at your convenience.
It’s exciting that more people are coming along that can help in lots of different ways – but that doesn’t mean I can slack off. We need them to expand what we’re doing, not just replace it.
Our magazine finally went to press, albeit a week late. We’re already late on the next one. I haven’t made a dent in my HPS duties for two weeks. I feel like if it’s not babies – it’s someone – I know people who are dying.
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 Here's another picture from Carmen. This is Hilda standing in front of one of the clinics they visited to get the word out about HPS.
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 Here's another picture Carmen sent me from the Puerto Rico trip. This is one of the proud daddies at the HPS Family Conference in Ponce. And isn't the baby a cutie - I'm such a sucker for babies!
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Quite a while back I'd posted about the pending lawsuit against Target concerning the accessabiity of its Web site. Here's a press release regarding a settlement in that case. I'm glad to hear it was worked out and the improvements will be made. National Federation of the Blind and Target Agree to Class Action Settlement
8/27/2008
FOR IMMEDIATE RELEASE
CONTACT: Chris Danielsen Target CommunicationsPublic Relations Specialist (612) 696-3400National Federation of the Blind(410) 659-9314, extension 2330(410) 262-1281cdanielsen@nfb.orgNational Federation of the Blind and Target Agree to Class Action Settlement
Target Will Ensure That Web Site Remains Accessible to Guests Who Use Assistive Technologies
Baltimore, Maryland (August 27, 2008): The National Federation of the Blind (NFB) and Target (NYSE: TGT) announced today that they have settled a class action lawsuit regarding access to the Target.com Web site by blind people. Dr. Marc Maurer, President of the National Federation of the Blind, said: “Access to Web sites is critical to the full and equal participation of blind people in all aspects of modern life. The National Federation of the Blind is pleased to have reached a settlement with Target that is good for all blind consumers, and we recognize that Target has already taken action to make certain that its Web site is accessible to everyone. We look forward to working with Target in the coming months to help make additional improvements that will enhance the experience of blind visitors to Target.com. It is our sincere hope that other businesses providing goods and services over the Internet will follow Target’s example and take affirmative steps to provide full access to their Web sites by blind consumers.”
Bruce Sexton, Jr., a named plaintiff in the case from the beginning, added: "This settlement marks a new chapter in making Web sites accessible to the blind. I commend Target for committing to being a leader in online accessibility."
Steve Eastman, president of Target.com, said: “First and foremost, Target is committed to serving all our guests. As our online business has evolved, we have made significant enhancements in order to provide an accessible shopping experience. We are pleased to have reached an agreement with the National Federation of the Blind regarding the accessibility of Target.com for individuals who use assistive technologies and will work with the NFB on further refinements to our Web site.”
As part of the settlement, Target will establish a $6 million fund from which members of the California settlement class can make claims. In addition, the National Federation of the Blind will certify the Target Web site through its Nonvisual Accessibility Web Certification program once agreed upon improvements are completed in early 2009. Target and NFB have agreed to a three-year relationship during which NFB will perform accessibility testing of the Target Web site. For more information about the terms of the settlement, please visit www.nfbtargetlawsuit.com.
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About the National Federation of the BlindWith more than 50,000 members, the National Federation of the Blind is the largest and most influential membership organization of blind people in the United States. The NFB improves blind people’s lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. It is the leading force in the blindness field today and the voice of the nation's blind. In January 2004 the NFB opened the National Federation of the Blind Jernigan Institute, the first research and training center in the United States for the blind led by the blind.
About Target
Minneapolis-based Target serves guests at 1,648 stores in 47 states nationwide by delivering today’s best retail trends at affordable prices. Target is committed to providing guests with great design through innovative products, in-store experiences and community partnerships. Whether visiting a Target store or shopping online at Target.com, guests enjoy a fun and convenient shopping experience with access to thousands of unique and highly differentiated items. Target (NYSE:TGT) gives more than $3 million a week to its local communities through grants and special programs. Since opening its first store in 1962, Target has partnered with nonprofit organizations, guests and team members to help meet community needs.
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Some of the long-time readers might remember some of the posts I’ve written about how excited I am regarding efforts being made these days to address the needs of blind/visually impaired kids in science classes. I’m not sure that I ever would have chosen science, or that I would have a natural aptitude for it given how numerically challenged I am – but I never even thought about it. It was one of those fields that, obviously wrongly, seemed about as out of reach as being a taxi driver.
The National Federation of the Blind has hosted several science camps etc. And now here’s another conference addressing this subject. It’s a trend! Yippee!!!!
Conference brings science into focus for visually impaired
Aug. 6, 2008
by Terry Devitt
Science can be a difficult topic for anyone to master. Imagine, then, trying to conquer chemistry, physics and astronomy without the benefit of vision.
That, in fact, is an everyday problem for thousands of visually impaired individuals, and the traditional means and methods of teaching science are not always amenable to a good learning experience for students. In the extreme, the hurdle can prevent students from being exposed to science and its career potential.
To address the problem, a conference titled Independent Laboratory Access for the Blind Conference on Teaching, Learning and Practicing Science for Students with Visual Impairments has been scheduled for Saturday, Aug. 16, at the University of Wisconsin-Madison.
The daylong conference, which is free and open to the public, is geared primarily to visually impaired students as well as their parents and teachers, says Andrew Greenberg, education and outreach coordinator for UW-Madison's Nanoscale Science and Engineering Center and Institute for Chemical Education and an organizer of the conference.
"The idea of this project is to build independence in students and to get them to think about a career in science," Greenberg explains.
One of the conference organizers and a speaker is Cary Supalo, a blind graduate student in chemistry at Penn State University.
The conference will feature morning workshops for hands-on learning with adaptive technologies, a lunch with the experts forum and an afternoon symposium with talks by science education researchers and students and scientists with visual impairments.
The goals of the conference include:
· Raising awareness of new technologies for teaching science to students with visual impairments.
· Sharing successful, low-cost teaching strategies for the visually impaired.
· Building a community of students and science teachers who may be visually impaired or who have an interest in the topic.
· Encouraging the pursuit of careers in science by the visually impaired.
Early registration for the free conference is encouraged. Supporters include the National Science Foundation, the UW-Madison Nanoscale Science and Engineering Center and the UW-Madison Eye Research Institute.
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The following story came through my Google alerts today. It’s from the opinion page of the Chicago Tribune and is written by someone with low vision. I thought some of you would enjoy it.
I’ve always tended to be conservative on the reasonable accommodation front. I believe that nothing in life is really free, and that there is a price to be paid when you ask for something – so you better make sure it’s worth the cost – financial, emotional or social.
If we as blind/low vision people really want to be equal members of society (as we all believe we are) than we must restrict our “ask” to the things that really do create equality. We need to ask for things that level the playing field in the greater world, and not things that simply change the field altogether.
I’m not saying that there’s anything wrong with asking for an accommodation – I do it! I’m just saying that some accommodations promote independence while others foster dependence.
Here’s an example of what I mean. When I was in college I ran a group for blind students for a while with several other friends. One of the challenges we faced was some division about what should be expected from the University – a university, by the way, that seemed to us to comply with things like ADA in a very window dressing sort of way. There was no doubt we needed services we weren’t getting – and didn’t need some of the services we were getting – but what was worth advocating for?
Some things were an easy agreement. At the time, (the early 90s) there was not a single computer on campus (a university with 30,000 plus students) acceessable to the blind or the visually impaired. Yet, more and more classes required the use of a computer. There were computer labs all over campus, but they might as well have had a big sign on the door stating: “no blind/visually impaired students allowed.” For sighted students there were countless classes offered by the computer center to help learn to use various programs and enhance one’s skills for employment – but none were accessable to us. Each department, each student, had to reinvent the wheel constantly and each time the University acted as though it was somehow a surprise to them that they had roughly 20 blind and visually impaired students on campus.
There was a minority, however, who wanted a whole myriad of other services. For example, note takers. Now, there are different situations and different types of classes etc. for which one really might need this – but when evaluating the need the students never seemed to think ahead to how they were going to accomplish the same tasks in the work force. Often their requests were based more on a lack of low vision/blindness skills than anything else. It wasn’t the university’s fault that they didn’t have these skills, nor was it the university’s responsibility.
Every student is expected to meet a certain standard of readiness before attending college. And if you’re not ready, you’ve got to take a step back and get ready.
The social cost to the rest of us was the perpetuation of the myth that as blind and visually impaired students, we really couldn’t make it with independence. Some of us didn’t appreciate that very much.
Because of this experience, I find myself perhaps overanalyzing everything I ask for – is the ask going to make me independent, or is it going to create dependence? Is there anything I can do to adapt?
I, for example, don’t really care what a print newspaper looks like. There are a number of newspapers available for free across the country on a dial-up basis. And thanks to the Web, I can pretty much adapt the text to my liking on my own. It would be nice if some sites improved some of the navigation behind the scenes to make it easier for those that use screen readers – an equality creating accommodation.
But some of the other things mentioned I can SO identify with. It drives me bananas that the only way to really see a theatrical production well is to pay through the nose for tickets – that doesn’t seem fair to me.
And yes, if a bookstore does happen to have a large print section, why, oh why, do they insist on either putting the books on the top or bottom shelf making it incredibly difficult for anyone that might need large print to browse.
And the airport kiosks – I HATE THEM!
It annoys me that the airlines have installed these things so that now you can never figure out where the line is and where you’re supposed to go to get help. How often have I, with my cane, wandered around for an extended period of time trying to get some direction or help while some airline employee likely watched the whole time? There’s nothing equal about that.
And if there is a clearly defined line, it’s usually filled with travelers that are having problems with their tickets. If I could see the kiosks I could come and go in minutes – but when I can’t read them I can stand in line for as long as a half hour or more while each major customer service crisis is attended to – and that doesn’t seem fair.
And yet we must all recognize that there’s often more than meets the eye to anyone’s situation or needs. Sometimes I feel a lot of pressure to be the “super blind” lady, the walking public relations billboard.
I have some uber-independent blind friends who poopoo the fact that I now ask for assistance at the airport – something that as a frequent traveler with good O&M skills I’ve almost never done.
But I’m not asking because of my vision. I’m asking because of my health issues. Going through security with me is a nightmare – you really don’t want to be behind me and it isn’t fair if you are. Traveling with a laptop, CPAP, a backpack full of drugs and inhalers etc. is quite the scene. There I am trying to take out the laptop, the camera, take off my shoes, jacket, and then take out my CPAP as it must be screened separately. The pill bottles start to roll all over the place. Sometimes there are items in my ostomy care supplies that create suspicion. I lose track of valuable possessions going through the machine making me ripe pickings for a crook because I’ve got TSA searching this and carrying away that. Sometimes it’s not just about the vision.
Okay, that’s my rant for the day – enjoy!
chicagotribune.com
Visually impaired must raise voices
By James Alan Fox
August 15, 2008
If you can read these words—that is, without straining, squinting, holding the paper under a magnifier or using any other low-vision aid to decipher this small font—then this column is not about you. Still, please read on, as the message has everything to do with you and the majority of people who are uninformed about the special struggles of the visually impaired.
By way of establishing my own credentials in this area, I was for very many years registered with the Massachusetts Commission for the Blind as "legally blind." I received wonderful assistance from the agency, as well as certain government benefits, such as an extra tax exemption and excise tax abatement on my automobile (an irony that always amused my friends). More recently, after eye surgery, my vision no longer falls within the limits of legal blindness. Whatever it may be called now ("illegally blind"?), I still struggle in a world that is itself blind and ignorant to vision impairment unless it comes with dark glasses and a white cane.
The examples of low-vision challenges—some rather unnecessary ones—are all around. These are but a few:Presumably to save space and cut costs, most daily papers put certain features well beyond the abilities of those with less-than-normal sight. I thought my vision had improved, yet I can no longer distinguish lefty from righty in the daily pitching form. And there is surely no space-saving purpose for using a gray backgroundfor certain graphics, with aesthetics trumping readability.
I always seek out the tiny large-print section in bookstores. But for some unexplained reason, these editions are sometimes arranged on the very top shelf where the titles can't be read except by people who needn't read them. Although I complain, bookstores fail to see the incongruity and choose not to alter the corporate-imposed store layout.
Traveling is consistently difficult for reasons that make little sense. Why do airport monitors have to be hung so high? The new check-in kiosks, which are not all that simple to read or follow, have at least freed up the ticket agents to stand around and look on with puzzlement as I bend or kneel to read the computer screen.And there is absolutely no blind justice at airport food courts. Forget about reading the menus placed high up on the walls behind the fast-food counters. It is demeaning and embarrassing to ask some disinterested cashier to read off the breakfast selections while a line of hungry and impatient travelers grows behind me.
Entertainment must really be a luxury, as so many house policies seem to be stacked against those like me. On countless occasions, the visually impaired "accommodation" at concert halls and sporting events is the wheelchair section located in the very back row. To add insult to injustice, the ticket-seller for the rock concert has the nerve to ask why it matters where I sit because all that is important is hearing the music. Do you suppose the "good seats" are expensive just because the music is louder up front?I do not mean to suggest that all businesses and establishments turn a blind eye to issues of sight impairment. A few enlightened Major League Baseball teams, for example, have a wonderful policy of reserving a few selected seats for visually impaired fans, right behind the protective home-plate screen. This seating arrangement definitely helps, though I must truly look stupid to folks watching the telecast at home in high definition when I raise my powerful binoculars to see the batter some 40 feet away.
Of course, there are those in the crowds who complain when, on occasion, people like me have access to purchasing some really choice seats without being scalped in the process. They simply fail to see what I don't see: The front row seems as close up to me as the back row does to them.It is high time for we of limited vision to raise our voices and collectively demand fairness. The farsighted world is blind, or at least myopic, when it comes to seeing the somewhat unnecessary struggles of those in the low-vision set. The fundamental problem is that when people think disability, they think paraplegic. When people think accommodation, they think wheelchair accessible.
Meanwhile, many midrange disabilities go unacknowledged.The U.S. Congress is working to reinforce the prescriptions and requirements of the Americans with Disability Act. However, lawmakers give relatively little thought to the challenges of the visually impaired. It is yet another disappointing case of out of sight, out of mind.
James Alan Fox is a professor of criminal justice and law at Northeastern University. His sight impairment has existed from birth.
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 Here are some of the HPS adults that came to the conference on Saturday. Thanks for the photo Carmen!
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This past Saturday the HPS Family Conference Puerto Rico was held in Ponce. We estimate there were about a 100 people there. That number is down from previous years, however. There was a snafu with transportation and the conference didn’t receive as much media attention as in the past, thus these factors may account for the attendance drop.
Even so, the conference was a success. We found several people that might be candidates for some of the trials underway at NIH (although they’ll have to be evaluated further). We made some good contacts that we didn’t have before. The families that attended learned things they didn’t already know.
The outreach accomplished during the week was also wonderful. While the conference was taking place, Carman and Hilda slipped away to give a lecture to a class of forty master’s students studying special education. That went very well too.
Sometimes with these outreach efforts, it takes a little time for the results to filter in. We’re still getting folks filtering our direction from the outreach in Florida. Thus, it can be hard to put a number on how many people were reached right now.
There were some rough spots along the way, some last-minute problem solving, but everyone stepped up. We really want to thank the folks from NIH for all their patience during the week and for making the effort to be available for us. They don’t have to do that. When they give up a week, and a weekend, to be there for us it isn’t a job requirement and they’re choosing to give us some of their personal time that could otherwise be spent with their families. We really do appreciate it.
And I also want to thank Hilda. Hilda is the outreach queen. She’s a master at knocking on doors, asking lots of questions and figuring out what she needs to know. Maybe she was a reporter in a former life? He he he…just kidding.
And thanks to Richie and Ivette. Organizing an event is extremely stressful – and when speakers etc. cancel at the last minute it’s enough to make you want to lose your mind. Thanks to both of them for being willing to invest the time and energy into helping us find the cure.
And thanks to Donna for being away from home for yet another week and for always making herself unconditionally available and always focused on the goal – finding the cure.
And thanks to Carmen and Liz – both Spanish speaking board members who went along and were tons of help to Donna and the doctors by helping us bridge the language gap. And last, but certianly not least, thanks to Jose. Jose is the guy who schedules all of our appointments at the NIH, makes sure we can get our airline tickets, coordinates Hector the cab driver's services etc. But Jose does much more than that. He gets to know the patients. He could easily avoid doing that, but he makes the effort, spends time with them when they're at NIH etc. He also went to Puerto Rico. Those kinds of relationships are so important to our patients. We really appreciate the fact that Jose recognises the need to do that and to go the extra mile. Now, onto the next outreach effort – Philadelphia!
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I tested this recipe and it was really good.
Sesame Chicken Strips
Ingredients
1 cup mayonnaise
2 teaspoons dried minced onion
2 teaspoons dried mustard
1 cup crushed butter-flavored crackers
½ cup sesame seeds
2 pounds boneless chicken breasts
Methods
In a bowl combine the mayonnaise, onion and dried mustard. In another bowl combine the crackers and sesame seeds. Cut the chicken into strips. Dip the strips into the mayonnaise mixture and then into the cracker and sesame seed mixture. Place on a large greased baking sheet (with sides so any juices don’t run all over the over). Bake at 425 for 15 to 18 minutes. Serve with your favorite dipping sauce.
Note: Cut calories by using reduced fat mayonnaise or plain yogurt. Use low calorie crackers instead of butter crackers.
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I made this tonight - and it was yummy!
Cucumber salad
Ingredients
1 cup mayonnaise
¼ cup sugar
4 teaspoons vinegar
½ teaspoon dill weed
4 medium cucumbers peeled and cut thin
3 green onions chopped finely
Method
Combine the mayonnaise, sugar, vinegar and dill weed in a bowl. Add the thinly sliced cucumber and the green onions. Toss and chill.
Note: To make a low calorie version of this salad try using reduced fat mayonnaise and Splenda instead of sugar.
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 Here's Ashley this morning with another little HPS'er.
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 The HPS crew gives a lecture at a local University.
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I cut this recipe out of a magazine thinking it might be fun to make lemonade the old fashioned way. It's a lot easier if you have a juicer. I had to squeeze by hand and it was a lot of work. But, it was the best lemonade I've ever had - way better than concentrated stuff. It hits the spot on a hot day!
Old Fashioned Lemonade
Ingredients
5 lemons
5 limes
5 oranges
2 cups of sugar
3 quarts of water (or less if you like it tarter)
Method
Squeeze the juice from four of the lemons, limes and oranges into a gallon container. Make sure you get every last drop possible. Thinly slice the remaining fruit and set aside to be used as a garnish. Add the water and sugar to the juices and mix well. Chill in the fridge and serve over ice. (You can experiment with how tart or sweet, or how watered down the lemonade is by altering the amounts of sugar and water to taste.)
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