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Congressional Record—House H8768 H8768 CONGRESSIONAL RECORD — HOUSE December 4, 2001 Mr. BILIRAKIS. Mr. Speaker, I yield life much more comfortable and bear- Mr. Speaker, in closing, this Member urges such time as he may consume to the able for those who suffer with that dis- his colleagues to support H. Con. Res. 25. gentleman from Louisiana (Mr. TAU- ease today. Ms. JACKSON-LEE of Texas. Mr. Speaker, ZIN), the chairman of the full com- Again, I want to congratulate my I rise today in support of H. Con. Res. 25, mittee. colleague from New York for her fine which expresses the sense of Congress re- Mr. TAUZIN. Mr. Speaker, I thank work, and the chairman of the Sub- garding tuberous sclerosis. This measure the chairman for yielding me this time committee on Health (Mr. BILIRAKIS), urges increased federal aid for research and and commend him for moving so expe- and the ranking member, the gen- calls on the Director of the National Institutes ditiously on this resolution, and also I tleman from Ohio (Mr. BROWN), for of Health to help develop a five-year research want to commend the gentlewoman their excellent cooperation in moving plan for tuberous sclerosis. H. Con. Res. 25 from New York (Mrs. KELLY) for her in- this and similar resolutions forward. also declares that all Americans should take credible work in this area and other Mr. BEREUTER. Mr. Speaker, as a cospon- an active role in the fight against this genetic areas. I understand she is also very sor of the concurrent resolution, this Member disorder. similar, in moving a similar resolution wishes to add his strong support for H. Con. At least two children born each day will be on Crohn’s Disease. Res. 25, which expresses the sense of Con- affected with tuberous sclerosis (TS). Nearly Yesterday, in the Nation’s capital, gress that the Federal Government has a re- one million people worldwide are known to we had an amazing function of families sponsibility to raise public awareness of tuber- have TS. TS does not discriminate against across America gathering for the Can- ous sclerosis and educate all Americans about any race or ethnic group. cer Research Family Awareness Lunch- the importance of the early detection of, and According to a report released by the Tuber- eon. Sam Donaldson was here, himself proper treatment for the disease. ous Sclerosis Association, preschool children a cancer survivor. The whole idea be- This Member would like to commend the with TS develop intellectual and behavioral hind the luncheon was to honor those distinguished gentleman from Louisiana [Mr. problems. The intellectual development varies who have worked tirelessly to make TAUZIN], the Chairman of the House Com- greatly. Approximately 40% will not have glob- people aware of what early detection mittee on Energy and Commerce, and the dis- al (affecting all areas of intelligence) intellec- can do to cure it. tinguished gentleman from Michigan [Mr. DIN- tual impairments. The remaining may have My mother is a three-time cancer GELL], the ranking member of the House Com- mile, moderate, or severe mental retardation. survivor. In each case, because she mittee on Energy and Commerce, for bringing It appears that children under the age of five caught it early, she was cured with op- this important resolution to the House Floor years with moderate to severe mental retarda- eration rather than chemo or radi- today. This Member would also like to com- tion will remain mentally retarded to this de- ation, sort of a miracle. It started in mend the gentlelady from New York [Mrs. gree into adulthood. 1960 with breast cancer; in 1980, then KELLY] for sponsoring H. Con. Res. 25 and for Problems with behavior are some of the lung cancer; and, just recently, with her personal interest in tuberous sclerosis. most common difficulties experienced by chil- uterine cancer. Tuberous sclerosis complex (TSC) is a ge- dren with TS. Poor expressive language, poor The fact that we make people aware netic disorder characterized by seizures and development of social skills, motor impair- of these diseases so that their doctors tumor growth in vital organs such as the brain, ments, and hyperactivity or inattention are a and moms and dads can spot them heart, kidneys, lungs and skin. Individuals with few examples. when we see them and treat them soon- tuberous sclerosis commonly begin having sei- As this bill prescribes, early intervention is er makes immeasurable difference not zures during the first year of life, and conven- most effective. It has been found that during only in the care and treatment of these tional epilepsy therapies often do not control the first five years of life, developmentally dis- diseases, but very often in life itself. the seizure activity in infants, children or abled children tend to fall farther and farther Many cancer survivors were there to adults. Seizures, as well as brain tumors, con- behind children their own age who do not tell their stories yesterday about how, tribute to cognitive impairment. As a result, a have developmental difficulties. These de- because someone took the trouble to majority of those afflicted with tuberous scle- clines in the rate of intellectual development of talk about these diseases on television, rosis experience some form of learning dis- disabled children and reduce with early inter- on the radio, on the floor of the House ability or behavioral problem, such as attention vention. today, somebody paid attention, some- deficit hyperactivity disorder, autism or mental Mr. Speaker, let us work together to raise body caught it early, and somebody retardation. awareness of tuberous sclerosis and help chil- was better off for it. This Member recently received a letter from dren with this disorder to live a normal life. I Yesterday, for example, a young his constituents, Mr. and Mrs. Lorenz Nie- urge my colleagues to support H. Con. Res. woman who is an anchor of a San Anto- meyer. The Niemeyer’s are the proud grand- 25. nio, Texas television station was hon- parents of a 23-month old granddaughter, who Mr. BROWN of Ohio. Mr. Speaker, I ored for the work she did. She discov- was diagnosed with tuberous sclerosis at four yield back the balance of my time. ered she had breast cancer. Instead of weeks of age, having tumors on the brain. The Mr. BILIRAKIS. Mr. Speaker, I have hiding the fact, she went on the air Neimeyer’s fear that their granddaughter is se- no further requests for time, and I with it and actually did a documentary verely disabled, both mentally and develop- yield back the balance of my time. of how she went through treatment, mentally. The SPEAKER pro tempore (Mr. and how they operated on the cancer The toll on the family of a person with tuber- PETRI). The question is on the motion and how she went through the incred- ous sclerosis is enormous. Care for a tuber- offered by the gentleman from Florida ible ordeal of the chemotherapy, losing ous sclerosis patient often requires on-going (Mr. BILIRAKIS) that the House suspend her hair. She even did an anchor one treatment that involves multiple medical spe- the rules and agree to the concurrent night, bald, just to show that you can cialists, speech, occupational and other thera- resolution, House Concurrent Resolu- get through these things and you can pists, as well as those skilled in the proper tion 25, as amended. live and you can survive if you are will- care and educational and emotional develop- The question was taken; and (two- ing to be brave enough to face these ment of a medically and mentally disabled in- thirds having voted in favor thereof) diseases head-on and treat them early dividual. the rules were suspended and the con- and deal with them. House Concurrent Resolution 25 expresses current resolution was agreed to. Here, in this case, the gentlewoman the sense of the Congress that the Federal A motion to reconsider was laid on from New York (Mrs. KELLY) has Government has a responsibility to raise pub- the table. brought to us a concern of so many lic awareness of tuberous sclerosis and edu- f families, 50,000 families in America cate all Americans about the importance of the which have someone in their family early detection of, and proper treatment for, NATIONAL HANSEN’S DISEASE with tuberous sclerosis. And here is an- tuberous sclerosis. In addition, the resolution PROGRAMS CENTER other genetic disease that, if we pay urges an increase in funding for research on Mr. BILIRAKIS. Mr. Speaker, I move enough attention to it, put a little re- tuberous sclerosis. Finally, H. Con. Res. 25 to suspend the rules and pass the bill search money on it, we will find a way urges the National Institutes of Health to take (H.R. 2441) to amend the Public Health to cure it and save an uncounted num- a leadership role and to provide a five-year re- Service Act to redesignate a facility as ber of lives not only in America but search plan in the fight against tuberous scle- the National Hansen’s Disease Pro- around the world, and certainly make rosis. grams Center, and for other purposes. December 4, 2001 CONGRESSIONAL RECORD — HOUSE H8769 The Clerk read as follows: 6,500 cases of this disease in the United Mr. BAKER. Mr. Speaker, I thank H.R. 2441 States. the gentleman for yielding me this Be it enacted by the Senate and House of Rep- In the 105th Congress, the National time and wish to express my apprecia- resentatives of the United States of America in Hansen’s Disease Programs, located in tion to both gentlemen for their cour- Congress assembled, the Gillis Long Disease Center in tesies in facilitating such prompt con- SECTION 1.
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