[Congressional Record Volume 158, Number 32 (Wednesday, February 29, 2012)]
[Extensions of Remarks]
[Pages E287-E290]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




               RECOGNIZING INTERNATIONAL RARE DISEASE DAY

                                 ______
                                 

                         HON. TIMOTHY H. BISHOP

                              of new york

                    in the house of representatives

                      Wednesday, February 29, 2012

  Mr. BISHOP of New York. Mr. Speaker, I rise to recognize the fifth 
International Rare Disease Day, a day reserved to promote awareness of 
the approximately 6,800 rare diseases afflicting 30 million Americans.
  In the United States, a rare disease is one that affects fewer than 
200,000 people. The National Organization of Rare Disorders estimates 
that one in ten Americans are suffering today from a rare disease. 
Thanks to patients and their families, the medical community, and 
organizations established to advocate for greater awareness and 
research, advances have been in the diagnosis and treatment of many of 
these diseases. With a renewed commitment to scientific research and 
discovery,

[[Page E288]]

we can provide much more than treatments and disease management to 
millions of our suffering constituents, we can provide cures.
  In my congressional district, I have met with countless constituents 
and their families whose lives have, in one way or another, been 
impacted by a rare disease such as Epidermolysis Bullosa, commonly 
known as EB, which is characterized by the presence of extremely 
fragile skin that results in the development of recurrent, painful 
blisters, open sores, and in some forms of the disease, in disfiguring 
scars, disabling musculoskeletal deformities, and internal blistering. 
EB affects approximately 12,000 individuals in the United States.
  I have also met with families impacted by Duchenne Muscular 
Dystrophy. This is a form of muscular dystrophy found in boys who 
experience a progressive loss of muscle function. Parent Project 
Muscular Dystrophy estimates that 15,000 young men suffer from 
Ducherme.
  Marfan Syndrome is another rare disease that has impacted my 
constituents. Marfan Syndrome is a disorder of the connective tissue 
that can affect the skeletal, cardiovascular, and nervous systems, the 
skin, eyes, and lungs. While there is no cure, an early diagnosis and 
proper treatment can provide a normal life-span. The National Marfan 
Foundation estimates that 200,000 are affected by Marfan Syndrome.
  Finally, I would like to take this opportunity to also mention 
Dysautonomia, a group of disorders that cause a breakdown or failure of 
the autonomic nervous system which regulates involuntary functions of 
the body: heart rate, blood pressure, body temperature, and 
perspiration. Some forms of this order are characterized as rare 
diseases such as Multiple System Atrophy and Familial Dysautonomia. 
Although other forms such as Postural Orthostatic Tachycardia Syndrome, 
Neurocardiogenic Syncope, and Autoimmune Autonomic Ganglionopathy are 
not, this does not detract from their importance and should not result 
in a federal commitment less than resolute in discovering advances to 
help increase accurate diagnosis and better treatment. Together, the 
National Dysautonomia Research Foundation estimates that over one 
million Americans are impacted by an autonomic system disorder.
  Today, Mr. Speaker, I join with patients, their families, and 
millions in the United States and around to the world to recognize this 
important day. I urge my colleagues to take a moment today to think 
about what more Congress can do to help Americans and their families 
suffering from rare diseases. Together, we can do more for all.
    

[[Page E289]]

                       SENATE COMMITTEE MEETINGS

  Title IV of Senate Resolution 4, agreed to by the Senate on February 
4, 1977, calls for establishment of a system for a computerized 
schedule of all meetings and hearings of Senate committees, 
subcommittees, joint committees, and committees of conference. This 
title requires all such committees to notify the Office of the Senate 
Daily Digest--designated by the Rules Committee--of the time, place, 
and purpose of the meetings, when scheduled, and any cancellations or 
changes in the meetings as they occur.
  As an additional procedure along with the computerization of this 
information, the Office of the Senate Daily Digest will prepare this 
information for printing in the Extensions of Remarks section of the 
Congressional Record on Monday and Wednesday of each week.
  Meetings scheduled for Thursday, March 1, 2012 may be found in the 
Daily Digest of today's Record.



                           MEETINGS SCHEDULED
                                MARCH 6
     9:30 a.m.
       Armed Services
         To hold hearings to examine U.S. Central Command and U.S. 
           Special Operations Command in review of the Defense 
           Authorization request for fiscal year 2013 and the 
           Future Years Defense Program; with the possibility of a 
           closed session in SVC 217 following the open session.
                                                            SH 216
     10 a.m.
       Banking, Housing, and Urban Affairs
         To hold hearings to examine spurring job growth through 
           capital formation while protecting investors, part II.
                                                            SD 538
       Budget
         To hold hearings to examine perspectives on the 
           President's proposed budget request for fiscal year 
           2013 for the Department of Defense.
                                                            SD 608
       Energy and Natural Resources
         To hold hearings to examine the President's proposed 
           budget request for fiscal year 2013 for the Forest 
           Service.
                                                            SD 366
       Finance
         To hold hearings to examine tax reform options, focusing 
           on incentives for capital investment and manufacturing.
                                                            SD 215
     10:30 a.m.
       Homeland Security and Governmental Affairs
         To hold hearings to examine the nomination of Tony 
           Hammond, of Missouri, to be a Commissioner of the 
           Postal Regulatory Commission.
                                                            SD 342
     2:30 p.m.
       Foreign Relations
         To hold hearings to examine the President's proposed 
           budget request for fiscal year 2013 for international 
           development priorities.
                                                            SD 419
       Homeland Security and Governmental Affairs
         To hold hearings to examine the nominations of Mark A. 
           Robbins, of California, to be a Member of the Merit 
           Systems Protection Board, and Roy Wallace McLeese III, 
           to be an Associate Judge of the District of Columbia 
           Court of Appeals.
                                                            SD 342
       Commerce, Science, and Transportation
       Science and Space Subcommittee
         To hold hearings to examine keeping America competitive 
           through investments in research and development.
                                                            SR 253
       Intelligence
         To hold closed hearings to examine certain intelligence 
           matters.
                                                            SH 219

                                MARCH 7
     9 a.m.
       Armed Services
         To hold hearings to examine the situation in Syria; with 
           the possibility of a closed session in SVC 217 
           following the open session.
                                                            SD 106
     9:30 a.m.
       Agriculture, Nutrition, and Forestry
         To hold hearings to examine healthy food initiatives, 
           local production, and nutrition.
                                                            SH 216
     10 a.m.
       Agriculture, Nutrition, and Forestry
         To hold hearings to examine risk management and 
           commodities in the 2012 farm bill.
                                                            SH 216
       Commerce, Science, and Transportation
         To hold hearings to examine priorities, plans, and 
           progress of the nation's space program.
                                                            SR 253
       Homeland Security and Governmental Affairs
         To hold hearings to examine the President's 
           reorganization plan, focusing on retooling government 
           for the 21st century.
                                                            SD 342
       Judiciary
         To hold hearings to examine lending discrimination 
           practices and foreclosure abuses.
                                                            SD 226
       Appropriations
       Departments of Labor, Health and Human Services, and 
           Education, and Related Agencies Subcommittee
         To hold hearings to examine proposed budget estimates for 
           fiscal year 2013 for the Department of Health and Human 
           Services.
                                                            SD 124
       Veterans' Affairs
         To hold joint hearings to examine a legislative 
           presentation from the Veterans of Foreign Wars (VFW).
                                                            SD G50
     10:30 a.m.
       Appropriations
       Department of Defense Subcommittee
         To hold hearings to examine proposed budget estimates for 
           fiscal year 2013 for the Department of the Navy.
                                                            SD 192
     2 p.m.
       Aging
         To hold hearings to examine opportunities for savings, 
           focusing on removing obstacles for small business.
                                                            SD 562
     2:30 p.m.
       Commerce, Science, and Transportation
       Oceans, Atmosphere, Fisheries, and Coast Guard Subcommittee
         To hold hearings to examine the President's proposed 
           budget request for fiscal year 2013 for the Coast Guard 
           and the National Oceanic and Atmospheric 
           Administration.
                                                            SR 253
       Energy and Natural Resources
       National Parks Subcommittee
         To hold hearings to examine S. 29, to establish the 
           Sacramento-San Joaquin Delta National Heritage Area, S. 
           1150, to establish the Susquehanna Gateway National 
           Heritage Area in the State of Pennsylvania, S. 1191, to 
           direct the Secretary of the Interior to carry out a 
           study regarding the suitability and feasibility of 
           establishing the Naugatuck River Valley National 
           Heritage Area in Connecticut, S. 1198, to reauthorize 
           the Essex National Heritage Area, S. 1215, to provide 
           for the exchange of land located in the Lowell National 
           Historical Park, S. 1589, to extend the authorization 
           for the Coastal Heritage Trail in the State of New 
           Jersey, S. 1708, to establish the John H. Chafee 
           Blackstone River Valley National Historical Park, H.R. 
           1141, to authorize the Secretary of the Interior to 
           study the suitability and feasibility of designating 
           prehistoric, historic, and limestone forest sites on 
           Rota, Commonwealth of the Northern Mariana Islands, as 
           a unit of the National Park System, H.R. 2606, to 
           authorize the Secretary of the Interior to allow the 
           construction and operation of natural gas pipeline 
           facilities in the Gateway National Recreation Area, S. 
           2131, to reauthorize the Rivers of Steel National 
           Heritage Area, the Lackawanna Valley National Heritage 
           Area, and the Delaware and Lehigh National Heritage 
           Corridor, and S. 2133, to reauthorize the America's 
           Agricultural Heritage Partnership in the State of Iowa.
                                                            SD 366

                                MARCH 8
     9:30 a.m.
       Armed Services
         To hold hearings to examine the Department of the Army in 
           review of the Defense Authorization request for fiscal 
           year 2013 and the Future Years Defense Program.
                                                            SD 106
     10 a.m.
       Health, Education, Labor, and Pensions
         To hold hearings to examine the key to America's global 
           competitiveness, focusing on a quality education.
                                                            SD 430
     2:15 p.m.
       Indian Affairs
         To hold hearings to examine the President's proposed 
           budget request for fiscal year 2013 for Native 
           Programs.
                                                            SD 628
     2:30 p.m.
       Homeland Security and Governmental Affairs
         To hold hearings to examine the President's proposed 
           budget request for fiscal year 2013 for the Department 
           of Homeland Security.
                                                            SD 342
       Intelligence
         To hold closed hearings to examine certain intelligence 
           matters.
                                                            SH 219

                                MARCH 13
     9:30 a.m.
       Armed Services
         To hold hearings to examine U.S. Southern Command and 
           U.S. Northern Command in review of the Defense 
           Authorization request for fiscal year 2013 and the 
           Future Years Defense Program;

[[Page E290]]

           with the possibility of a closed session in SVC 217 
           following the open session.
                                                            SD G50
     10 a.m.
       Energy and Natural Resources
         To hold hearings to examine the report of the Independent 
           Consultant's Review with Respect to the Department of 
           Energy Loan and Loan Guarantee Portfolio.
                                                            SD 366
     10:30 a.m.
       Homeland Security and Governmental Affairs
       Contracting Oversight Subcommittee
         To hold hearings to examine contractors, focusing on how 
           much they are costing the government.
                                                            SD 342
       Judiciary
         To hold hearings to examine the Freedom of Information 
           Act, focusing on safeguarding critical infrastructure 
           information and the public's right to know.
                                                            SD 226

                                MARCH 14
     10 a.m.
       Veterans' Affairs
         To hold hearings to examine ending homelessness among 
           veterans, focusing on Veterans' Affairs progress on its 
           five year plan.
                                                            SR 418
     2 p.m.
       Armed Services
       Personnel Subcommittee
         To hold hearings to examine the Active, Guard, Reserve, 
           and civilian personnel programs in review of the 
           Defense Authorization request for fiscal year 2013 and 
           the Future Years Defense Program.
                                                           SR 232A

                                MARCH 15
     9:30 a.m.
       Armed Services
         To hold hearings to examine the Department of the Navy in 
           review of the Defense Authorization request for fiscal 
           year 2013 and the Future Years Defense Program; with 
           the possibility of a closed session in SVC 217 
           following the open session.
                                                            SD G50
     2:15 p.m.
       Indian Affairs
         To hold an oversight hearing to examine Indian water 
           rights, focusing on promoting the negotiation and 
           implementation of water settlements in Indian country.
                                                            SD 628

                                MARCH 20
     9:30 a.m.
       Armed Services
         To hold hearings to examine the Department of the Air 
           Force in review of the Defense Authorization request 
           for fiscal year 2013 and the Future Years Defense 
           Program; with the possibility of a closed session in 
           SVC 217 following the open session.
                                                            SD G50

                                MARCH 21
     10 a.m.
       Veterans' Affairs
         To hold joint hearings to examine the legislative 
           presentations of the Military Order of the Purple 
           Heart, Iraq and Afghanistan Veterans of America (IAVA), 
           Non Commissioned Officers Association, American Ex-
           Prisoners of War, Vietnam Veterans of America, Wounded 
           Warrior Project, National Association of State 
           Directors of Veterans Affairs, and The Retired Enlisted 
           Association.
                                                            SD G50
     2 p.m.
       Judiciary
       Antitrust, Competition Policy and Consumer Rights 
           Subcommittee
         To hold hearings to examine Verizon and cable deals.
                                                            SD 226

                                MARCH 22
     10 a.m.
       Veterans' Affairs
         To hold joint hearings to examine the legislative 
           presentations of the Paralyzed Veterans of America, Air 
           Force Sergeants Association, Blinded Veterans 
           Association, American Veterans (AMVETS), Gold Star 
           Wives, Fleet Reserve Association, Military Officers 
           Association of America, and the Jewish War Veterans.
                                              345, Cannon Building

                                MARCH 28
     10 a.m.
       Veterans' Affairs
         To hold hearings to examine the nominations of Margaret 
           Bartley, of Maryland, and Coral Wong Pietsch, of 
           Hawaii, both to be a Judge of the United States Court 
           of Appeals for Veterans Claims.
                                                            SR 418
     2 p.m.
       Armed Services
       Personnel Subcommittee
         To resume hearings to examine the Active, Guard, Reserve, 
           and civilian personnel programs in review of the 
           Defense Authorization request for fiscal year 2013 and 
           the Future Years Defense Program.
                                                           SR 232A