Nancy Johnson

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Chairman, I yield back the balance of my time.

Mrs. JOHNSON of Connecticut. Mr. Chairman, we certainly are willing to accept the gentleman's amendment. It is a very thoughtful and important one.

Mrs. JOHNSON of Connecticut. I rise to support this amendment.

Mrs. JOHNSON of Connecticut. Mr. Chairman, I rise in opposition.

Mrs. JOHNSON of Connecticut. First of all, the gentleman from Illinois has brought a very thoughtful amendment to this bill. The information that he wants included in electronic health record is extremely important information, and I support your amendment.

Mrs. JOHNSON of Connecticut. Mr. Chairman, I rise in support of the amendment. I understand there are some technical adjustments that your staff and our staff talked about that we will work on.

Mrs. JOHNSON of Connecticut. With that understanding, I am pleased to support the gentleman's amendment.

Mrs. JOHNSON of Connecticut. Yes, I claim time in opposition to the amendment. Although I do not oppose the amendment, I would like to comment.

Mrs. JOHNSON of Connecticut. Mr. Chairman, I yield myself such time as I may consume. I would like to comment on the amendment. Mr. Price has been a very active and fine mind as we developed this bill, and I welcome his amendment. I do think we need to evaluate new methodologies and procedures very carefully; and as a physician, he brings to this issue a lot of information and a lot of concern about both advances and also problems that could develop. I will say one of the strengths of the bill that has not been talked about on the floor here today is that it does move us to the ICD 10 system from the ICD 9 system, and that will give us a great deal more ability to look at quality, to judge quality, to pay for quality, to analyze actually what series of symptoms responded best to precisely what treatment approach. But there are also shoals in every water, and I think your study is very appropriate. The ICD 10 system is now not only more glandular, but we also think it will help us to reduce fraud and abuse. But no matter how many positive things we think it will contribute, it is also wise to know and watch for and evaluate whether or not it is creating problems that we did not anticipate. So I welcome this study, and I thank Mr. Price for his contribution. Mr. Chairman, I yield back the balance of my time.

Mrs. JOHNSON of Connecticut. Mr. Chairman, I rise in strong support of this amendment. First of all, of all the systems in America that really need this kind of attention, it is our Medicaid system because they deal mostly with elderly and poor whose health has long been neglected. So I know this is going to give us a lot of very good insight and information into how we can both improve the quality and reduce the cost of care in our Medicaid system, and I congratulate the gentlewoman and her cosponsors for bringing this before us today. Miss McMORRIS. Mr. Chairman. I yield back the balance of my time.

Mrs. JOHNSON of Connecticut. Mr. Speaker, remember, adoption of HIPAA was a multi-year process, very controversial, very difficult, 50,000 comments just on the regulations.

Mrs. JOHNSON of Connecticut. My legislation explicitly does not change HIPAA. The behavior described of hacking in and revealing what would be under HIPAA is a fine of $250,000 and 10 years in jail. So HIPAA is there. It protects our privacy. What this bill does is to put in place a study to look at what has happened in the States, what has happened between State law and Federal law, to look and see if there are things that need to be done to create greater commonality amongst all these laws so that the nationwide interoperable health information system will protect health information to the current or a higher standard. So in the bill it has to be to a higher standard. But we maintain current law. There is absolute protection. And, remember, this specific approach was rejected by Donna Shalala and President Clinton; so do not take this vote lightly, folks. What you are voting for is a radical change in a law that is terribly important to all of us and we maintain in this bill.

Mrs. JOHNSON of Connecticut. Mr. Speaker, I demand a recorded vote.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Madam Speaker, I thank my colleague from New Hampshire (Mr. Bradley) for the opportunity to speak in support of this bill and particularly to thank him and to thank the chairman, Mr. Buyer, and the subcommittee chairman, Mr. Miller, for the work they have done to address the needs of our veterans and to accommodate the measures of myself and other colleagues' ideas we have brought to your attention in this bill. I am particularly grateful that you have included my bill in this reauthorization and will extend a provision for government furnished grave markers, because this bill arises from the experience of my constituents and the distress of families I represent at the demise of an old benefit for at least a certain number of years. The grave marker benefit enables all veterans to receive a headstone or grave marker commemorating their service to our country, at no cost to their families. There was a time when this benefit was available to all veterans, and then it was not available for a variety of reason, although it was uneven. It was available to some veterans and not others because of the regulatory complexity of the governing of a simple benefit. In 2001, it was enacted and 7,500 families nationwide took advantage of this provision, and that number continues to grow each year. One of the families that was enabled to benefit after 2001 was the family of Agostino Guzzo, a World War II veteran from my home State of Connecticut, who inspired the legislation in 2001 and who has inspired this legislation that we pass here today as part of this larger bill. It was his son that brought to my attention the quirk in the law and law procedures that was allowing some veterans, while denying other veterans an enduring recognition of their service to our country. Like you, I remain committed to providing America's veterans with benefits that fully recognize the sacrifices these men and women made in defense of our Nation. Our gratitude should be expressed not only in the education and employment benefits we provide them in life, but also through permanent remembrance of their service that we provide upon their passing. I thank the committee for including the grave marker provision in this bill, and I thank Secretary Nicholson and the VA for offering it their enthusiastic endorsement. I urge all my colleagues to join me in passing this important benefit for America's veterans as part of this larger upgrading of other veterans benefits. I thank you for allowing me this opportunity, and I thank the committee for its vigilance by Members on both sides of the aisle in regard to the interests of our veterans and the ever-changing needs of them as they age and as the shape of their lives change. So I thank you, I thank the staff Members, and I appreciate this opportunity to support this bill.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Speaker, I rise in strong support of overriding the President's veto of the embryonic stem cell research bill. Every time I go to a classroom in my district, I tell those kids, knowledge is power, and one of the reasons America is such a great Nation is because knowledge and freedom couple to drive the frontiers of knowledge forward, as they have in science and medicine. And here is another frontier. Yes, we will push forward. The President cannot fence in knowledge, the pursuit of knowledge, in a free society. But as we push forward, that research will not be covered and guided by the ethical code developed by NIH. As we push forward, millions of dollars will be wasted on building a parallel infrastructure of expensive equipment so the State and Federal dollars and the private and Federal dollars can be kept separate. It is a tragedy that our President has vetoed this important bill, and I will vote to override.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Speaker, I thank the gentleman from Pennsylvania for yielding. And I am delighted to be here on the floor with two of my colleagues who have been tremendous advocates of this free trade agreement and of the concept of free trade, the principle of free trade internationally and in our country. I want to make two general points. I am sorry that I wasn't able to be here earlier, and I do not want to repeat what my colleagues have said. But there are two important overall points that I want to make that, even if you have made them, are worth thinking again about. First is why free trade is important. Retirees simply do not, by definition, buy enough consumer goods to drive an economy our size. We are accustomed to a standard of living that is, frankly, the highest in the world. Our children expect to grow up and participate as adults in an economy that is thriving, in well-paying jobs that can provide them with a standard of living that my generation has enjoyed. Yet as the number of retirees explodes and the number of young people in the workforce contracts, our own Nation cannot provide the demand for goods that can produce the overall gross national product that will assure the standard of living we are accustomed to. So future generations are going to be more dependent on trade than we have been, and we must open markets for their goods. The American population will not be able to buy the amount of stuff that would drive an economy that can produce the standard of living that we have enjoyed. So if we do not have consumers around the world, and, remember, the great majority of consumers are outside the United States, if we do not cultivate them, if they do not open their markets to our products, then we cannot sustain the level of economic well- being, the standard of living to which we have been accustomed, and we thereby disadvantage our children. This small agreement with one small country will allow consumer and industrial goods to enter that country 100 percent duty free. One hundred percent duty free. And agricultural products will enter 87 percent duty free and over 10 years reach 100 percent duty free. This is a small market, but we are making these agreements with country after country after country. And most startling, our exports are growing most rapidly and the majority of our growth in export goods is with those countries that we have negotiated trade agreements with. Now, that stands to reason because if you sell your goods into a country where there is no duty, they are going to do better than if you sell them into a country where there is a 20 percent, 30 percent, 40 percent, 50 percent duty that pushes that price right up. So in the big picture, our children, our grandchildren cannot do well unless we lay the foundation by opening markets for American products all across the world. So our economic well-being depends on free trade agreements. Those free trade agreements, and the gentlemen here on the floor with me tonight have been strong advocates of fair trade agreements, these free trade agreements address labor standards, environmental standards. We are the only Nation in the whole world that pushes those issues in the negotiation of trade agreements with other countries, and we are reaching new standards as we move forward and gain more experience. Now we do not just require labor standards. We help nations build institutions to enforce those standards. So we look at do you have a department of labor. We look at does the department of labor have sufficient staff to enforce the law. We look at do the regulations take seriously the responsibility of enforcement. And we literally help nations not only understand how labor standards help them deliver the benefits of world trading to all in their society, but we help them understand that just having the standards to support all their people is not enough. You do have to be able to enforce those standards. You do have to be able to take action against the exploitive employer. So these trade agreements are good for our kids. They are good for peoples of the world. And that brings me to my second major point. Our security depends on agreements like that we have negotiated with Oman. The 9/11 Commission report cited our Middle Eastern free trade agreements and call for action on ``a comprehensive U.S. strategy that should include economic policies that encourage development, more open societies, and opportunities for people to improve the lives of their families and enhance the prospects of their children's future.'' In other words, the 9/11 report was saying if you do not address the causes that are creating terrorism and the willingness to be terrorists in other societies, you cannot solve the problem. And I want to just conclude by saying how very impressed I was when Ways and Means Committee members a little less than 2 years ago made a trip to the Middle Eastern nations that were interested in trade agreements and whose other trading agreements were about to expire. We knew that they would need to think about this in advance carefully. We know that participating in trade agreements means other countries have to modernize their law to meet high international standards. We knew it would take time, and we wanted to be sure to alert these other countries to the challenges that lay ahead for them in negotiating these free trade agreements and to the enormous benefits that would accrue to their people in not only the present but future generations. I must say, I was extremely impressed with the Sultan of Oman. He understood exactly what this was going to mean to his people. He is one of the Middle East leaders who understands that oil is a limited resource and he must prepare a broader base for economic success for his people in his own country, and he is doing some of the work in the more advanced areas of desalinization, thinking about the importance of water to his people and the demand in the world economy, particularly in the Middle East, for potable water. He is a very forward-looking man. He is very committed to participation in the political process by women as well as men. He has appointed successful women to his top council. They do things slightly differently because they are coming from a different path, but he was very proud to have started worker committees. That was his initiative, because he knows workers have to have a better voice. They have to be free to talk about the problems, to work with management, to work with owners for everyone's success. In this agreement, he has moved light years ahead, looking at the labor laws of other countries, understanding what it is going to take to provide the kind of support and protection that working people need in order for the benefits of trade to affect the lives, the quality of lives, the hopes and dreams, the opportunities of all the people in each society. So when you look at not only the way this agreement opens markets and what that means for our people, when you look at what this means for our security as this great friend of ours, for over 170 years, and a leader in the region in economic and governance reforms, what they accomplish by moving forward into new thinking and new institutions to modernize their economy, all embodied in this trade agreement, you know it means not only greater prosperity for his country and for our country, it means greater peace for the world. Free trade is about peace and prosperity. It must be fair trade. It must help all take part in the benefits of the trade agreement. This is a remarkable agreement, and I very much appreciate the two gentlemen on the floor here, Mr. Ryan of Wisconsin and Mr. English of Pennsylvania, for their diligent participation in all the consultative processes, because Congress is a part of developing these free trade agreements, that make these agreements possible. Your knowledge and expertise is truly a great service that you have given this country and that you have given our friend, Oman.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Chairman, I offer an amendment.

Mrs. JOHNSON of Connecticut. I thank you, but I thank you also for a very thoughtful bill in very tough times, truly one that does support safer communities and one that does help prepare our young people for a global environment. Mr. Chairman, I yield back the balance of my time.

Mrs. JOHNSON of Connecticut. I yield to the gentleman from Virginia.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. I thank the gentleman for yielding. I rise in strong support of H.R. 5574, legislation to reauthorize the Children's Hospital Graduate Medical Education program. Back in 1998, before my colleague from Ohio, Congresswoman Pryce, and I authored this legislation, Children's Hospitals' residencies were getting .5 percent of what Medicare provided for other teaching hospitals. Thanks to that legislation that we authored and put in place a number of years ago, Federal GME support for Children's Hospitals approaches 80 percent of what Medicare provides to other teaching hospitals. Yes, only 80 percent. Nonetheless, as a result, Children's Hospitals have been able to increase the number of residents they train, including both general pediatricians and pediatric specialists, increase the number of training programs they provide, and improve the quality of the training they provide and strengthen the programs they provide not only to residents but to the communities. Between 2000 and 2005 in my own State of Connecticut, the Connecticut Children's Medical Center increased the total number of full-time equivalent residents by 31 percent. About 50 percent of their graduates pursue careers in primary care and 50 percent go on to subspecialty fellowship programs. In addition to so significantly strengthening our capacity to care for children with serious medical problems, they also have introduced new curricula to provide training in community pediatrics and professional development and, indeed, have had a systemic impact on the practice of pediatrics in many settings throughout the State. I am proud of what they have accomplished. I am proud of what we have done here on this floor and in preceding Congresses to strengthen the training of pediatricians and pediatric specialists, and I urge support of this legislation. And I thank my colleague, Mr. Deal, for the work of him and his subcommittee and the full committee in bringing this forward this week.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Speaker, let us be clear. Terrorism, as a method of achieving political goals and settling political differences, is intolerable to the civilized world. Inevitably, terrorists will gain access to chemical, biological and even nuclear weapons. Never has a non-government organization been able to deliver weapons of mass destruction. That will be unprecedented, and it is truly intolerable. So terrorism, as an organized system of political action, must be defeated. Within the Palestinian Authority, for the first time, the issue of terrorism as a means of political action is now the issue between Mr. Abbas and the Prime Minister. And in Iraq, the same issue is being joined. The new Prime Minister recognizes that there can be no government if political organizations are to each have their own armies. Iraqis had the courage to vote for the adoption of an interim government, for a constitution, for a permanent government, and the Prime Minister, as well as communities throughout Iraq, get it, that governing themselves is what they want. Our forces have distinguished themselves in Iraq, both as skilled military units and model citizens, and I salute them. They have won the war we had to win, and are now training thousands of Iraqis and transferring authorities to Iraqi units to win the war only they can win. Our impatience to leave is matched by their impatience to take the reins of their destiny. The reins are being transferred. Patience, hope, perseverance. Our children will inherit a safer world. My heartfelt gratitude for those who have given their lives to our Nation, and for their families. America salutes you. I have a picture on my desk and letters in my files from families of talented young men and women killed in Iraq. I am proud of their commitment to our country of their service of the values they held dear. But I am unendingly sad--for the sacrifice they and their families have had to make. Let us be clear--terrorism as a method of achieving political goals and settling political differences is intolerable to the civilized world. Terrorism maximizes the killing of the innocent. Terrorism glorifies the brutality of torture and murder. Terrorism knows no diplomats and rejects negotiations as a means of resolving differences. In our world, weapons of mass destruction--chemical, biological, and nuclear--will be increasingly available to terrorist organizations espousing terrorism as a means of political action. That is unprecedented. Never has a non-nation organization been able to deliver weapons of mass destruction. That is unprecedented, unacceptable and intolerable. Yet terrorism as an organized system of political action has developed to new heights in the Middle East and it is there that it must be defeated. Within the Palestinian Authority, for the first time, the issue of terrorism as a method of political action is now the issue between Mr. Abbas and the Prime Minister. Very specifically, they are debating not the legitimacy of a national army or diplomacy, but the legitimacy of political armies, factional armies and terrorist action--that is, violence ungoverned by national interest or law. And in Iraq, the same issue is being joined. The new Prime Minister recognizes that there can be no government if political organizations (even if reflecting religious and ethnic differences) are to each have their own armies governed only by the unlimited rights of terrorists to kill others and terrorize those committed to public service. Iraqis had the courage to vote to adopt an interim government, to adopt a constitution, and to elect their first democratic government. The prime minister, as well as communities throughout Iraq, get it, that governing themselves is what they want, and they are in varying degrees. We as a people know the power of freedom under law. And our forces have distinguished themselves in Iraq, both as skilled military units and as model citizens respecting others and supporting and encouraging the local processes of governance. I salute our men and women of the U.S. military. They have won the war we had to win and are now training thousands of Iraqis and transferring authority to Iraqi units, to win the war only they can win. Ultimately, the Iraqi units will defeat terrorism as a method of political action and the people all over the world will triumph. Our impatience to leave is matched by their impatience to take the reins of their destiny. The reins are being transferred. Patience. Hope. Perseverance. Our children will inherit a safer world as a consequence of our success.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Speaker, I rise today to honor the City of Meriden, Connecticut, on the occasion of its 200th Anniversary on June 16, 2006. This city was known as the North Farms area of nearby Wallingford until 1806, when it was officially recognized as the Town of Meriden. The 1800s saw the beginnings of what would become a torrent of manufacturing activity in the city. Belts, hoops, pewter, guns, cutlery, nails, buttons, lamps, ivory combs, tin ware, organs, coffee grinders, and silver--the product that would lend its luster to Meriden's reputation as the ``Silver City''--were all manufactured here. Stately mansions were constructed as manufacturers prospered. As the thriving city's population grew to over 24,000 in 1900, the Castle Craig was dedicated in Hubbard Park and the Curtis Memorial Library opened soon thereafter. In the 1920s, the airport was built and the downtown traffic tower erected. Although the world wars and the depression brought hardships to the city as well as to the rest of the country, in March 1944, Meriden was proudly honored as ``The Nation's Ideal War Community'' for its industrial and patriotic contributions to the Nation. During the mid-1900s, some of the city's older businesses, including International Silver, moved or closed. Urban redevelopment changed the look of some sections, but the ``pleasant valley''--possibly the ancient meaning of the name Meriden--endured. Newly arriving immigrants added their own energy to the growing town. Civic groups grew in numbers and in service; daffodils, long planted at Hubbard Park, became the city's official flower with the celebration of the inaugural Daffodil Festival in April 1978. In recent years, Meriden's downtown has undergone a renaissance, as a new hospital was erected and many corporate headquarters relocated to the east side of town on Research Parkway. City manufacturing firms produce electronics, nuclear instruments, automotive devices, plastics, gaskets, communications equipment, filters, vaccines, jewelry, food, candy, pewter, tools, and machines. The city is proud of its past as it eagerly embraces its future. Mr. Speaker, I am proud to represent the city of Meriden in the United States House of Representatives, and I extend my best wishes to the city and its citizens for another 200 years of prosperity.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Speaker, I rise today to recognize and congratulate the Cornelia de Lange Syndrome Foundation on its 25th anniversary of Reaching Out, Providing Help and Giving Hope to children and their families across the country. The CdLS Foundation is an outstanding organization that has been serving people and families living with Cornelia de Lange Syndrome since 1981. Their national headquarters is located in the Fifth District of Connecticut, which I represent. The Foundation is a nonprofit, family-support organization that works to promote early and accurate diagnosis of CdLS, advance research into the causes of the condition, and assist those with CdLS throughout their lives. Their efforts impact the lives of people throughout the United States. Mr. Speaker, CdLS is a congenital condition, which means it is present from birth. It impacts on virtually all of a person's being. Physical and mental manifestations of CdLS may include: missing limbs or fingers; severe reflux; feeding difficulties; cleft palate; eye problems; hearing loss; seizures; and behavioral issues. Overall, cognitive and physical development is slowed, and delays in speech and communication are even more pronounced. The foundation celebrated a medical and scientific breakthrough in April 2004 when a research team led by scientists at the Children's Hospital of Philadelphia identified a gene on chromosome 5 that, when mutated, causes CdLS. NIH recently made a substantial grant to support continued research designed to help families and scientists alike understand the cause of CdLS and improve care for people living with this diagnosis. As a result of this discovery, we now know that CdLS affects approximately 1 in 10,000 live births, and it is thought to be present in as many as 20,000 children who have not been diagnosed. The foundation faces a significant challenge as it attempts to reach out to families who have a child with CdLS, especially those with more mild cases. Interventions and strategies for managing the syndrome and caring for these children can only be utilized once the presence of the syndrome has been confirmed. In order to raise the visibility of the syndrome, the foundation distributes publications to families and medical professionals, and hosts meetings and conferences where researchers and families can meet to exchange information. The foundation also acts as a facilitator between families and the medical community, utilizing the expertise of its Clinical Advisory Board, a team of more than 40 clinical and education professionals who act as on-call advisors. Once a family understands that their child has been touched by the syndrome, the foundation relies on its strong volunteer network to support children and families affected by CdLS, as well as educate local community members, government officials, and media about the syndrome. Most of these volunteers are family members of someone living with CdLS. Mr. Speaker, I am proud that an organization with such integrity and willingness to help their fellow citizens has called Avon, CT its home. I ask my colleagues to join me in thanking and recognizing the Cornelia de Lange Syndrome Foundation for its tremendous efforts.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Speaker, I thank the gentleman from Massachusetts. I am as concerned about oil prices at the pump as anyone. My constituents and I feel the pinch every single day, but as we consider this bill, let us look at the facts. Ninety-five percent of the north slope is available for drilling, and it is roughly flat. There are 4,000 offshore leases that oil companies hold but have not yet developed. The government is offering leases in the National Petroleum Reserve regularly and just last week leased up 2.8 million acres more. Directly relevant to this legislation is the fact that BP tried to develop wells adjacent to ANWR and recently moth-balled those wells because they produced so much less than expected. On the other hand, developments in the alpine fields, which is way west of ANWR, (there is ANWR; Prudhoe Bay and then the alpine fields) those wells produced twice as much as expected, 120,000 barrels per day versus the expected 60,000 barrels today. Lastly, existing fields are good for 20 to 25 years. They are almost entirely on State reserve lands, and we are now expanding leasing on State reserve lands, as well as Federal Reserve lands with very good success. President Harding set aside the National Petroleum Reserve when the Navy converted from coal to oil to assure a supply of oil for the Navy in the future. That supply is assured without ANWR. Oppose this bill. Drilling in ANWR is not necessary or called for. Preserve the unique, pristine ecosystem.

Mrs. JOHNSON of Connecticut

Mrs. JOHNSON of Connecticut. Mr. Speaker, it is with great sadness that I rise today to inform the House of the passing of Robert F. Carroll, a constituent of mine from Wolcott, Connecticut. I ask that you join me in paying tribute to this great man, who served both as the Chairman of the Board of the Aplastic Anemia & MDS International Foundation and the Assistant Executive Director for the Connecticut Association of Schools in Cheshire, CT. In April 1991, at age 57, Bob was diagnosed with myelodysplastic syndromes (MDS), a serious and non-contagious rare bone marrow failure disease. Bob was told he had MDS after having gone to his doctor for a routine check-up required by the school district for which he worked. He was given two to four years to live. He had always told his wife, Marie, that he would not want to know if he had a life-threatening disease. But courageously Bob transformed his fear of dying to a fear of dying without giving back. From at month in 1991 until today, Bob set about to make a difference for individuals and families suffering from bone marrow diseases. In early 1992, Bob and his wife were searching the Internet and came across the Aplastic Anemia & MDS International Foundation. He contacted the executive director immediately and, as a result, was given everything he needed to educate himself about the disease, clinical trials, and support networks of other patients. He soon became active and a member of the board. Four years later, he became President of the Foundation, the first patient President in the history of the organization. He believed in the same goals as the Foundation, which is to keep patients attitudes positive. He refused to let his life change because of his MDS. He did not retire, and instead continued with his career in education and the many projects that kept him active and busy. For 15 years, Bob advocated tirelessly for the tens of thousands of individuals diagnosed with bone marrow diseases (about 35,000 new cases are diagnosed annually). He also became involved in the recovery efforts in Sri Lanka after the devastating tsunami of 2004, traveling to that country and raising money in the U.S. for recovery efforts. And through his service with the Connecticut Association of Schools, Bob worked strenuously to improve the quality of education in our school systems. Bob was able to live with MDS thanks to the hundreds of transfusions he received over a period of 15 years. Unfortunately, though, there is no cure for MDS. The extreme low blood counts that are caused by MDS ultimately took their toll on Bob's long-term health Bob passed away yesterday in Connecticut. Bob would not want us to remember him as a victim of a rare disease, but rather as one who experienced a new challenge that gave greater purpose to his life. He often referred to MDS as his ``gift'' because it taught him that relationships with others are what are important in life. Let us honor this spirit today by paying the highest tribute to this great American and tireless advocate for those suffering from rare diseases.