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Lets get this signed into LAW!

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Lisa Salberg Find out more about Lisa Salberg
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  • Lets get this signed into LAW!

    CONGRESS OF THE UNITED STATES
    HOUSE OF REPRESENTATIVES
    WASHINGTON, D.C. 20515


    Fact Sheet: The Teague Act

    Problem:

    Ø Each month between 250 and 600 young people in the United States die suddenly and unexpectedly from cardiac arrhythmia syndromes.

    Ø These syndromes include long Q-T syndrome, hypertrophic cardiomyopathy, arrhymogenic right ventricular dysplasia, and others.

    Ø Long Q-T syndrome is more common in the United States than childhood leukemia.

    Ø Most cardiac arrhythmia syndromes that cause sudden death in the young are identifiable through screenings.

    Ø Once diagnosed, these syndromes are treatable, and individuals with these conditions can have normal life spans and life-styles.

    Ø Currently infants and children are not automatically screened for any cardiac arrhythmia syndromes. In addition, young people are not often tested for cardiac syndromes before participating in sports.

    Solution:

    The Teague Ryan Sudden Child Cardiac Arrhythmia Syndromes Screening and Education Act of 2005 would provide grants through the Centers for Disease Control to States, political subdivisions of States, and other public or nonprofit private agencies to be used for education and screenings regarding cardiac arrhythmia syndromes. The grants would specifically be used to screen children for sudden cardiac arrhythmia syndromes, provide referrals for medical services and provide education to health professionals and the public about cardiac arrhythmia syndromes, including education on screening.

    The language in the bill gives priority in making awards to screenings and referral programs for children who participate in, or intend to participate in, organized sports and to educational activities that are directed toward parents and health professionals.

    The bill appropriates $20 million for fiscal year 2006, and such sums as may be necessary for each of the fiscal years 2007 through 2010.

    MORE INFORMATION TO FOLLOW FROM THE HCMA!
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    BILL NUMBER PENDING - but call your congressman today and ask for his/her support.
    .................................................. ...................
    (Original Signature of Member)
    109TH CONGRESS
    1ST SESSION H. R. __
    To amend the Public Health Service Act to provide for a program of
    screenings and education regarding children with sudden cardiac arrhythmia
    syndromes.
    IN THE HOUSE OF REPRESENTATIVES
    Mrs. MCCARTHY introduced the following bill; which was referred to the
    Committee on ______________
    A BILL
    To amend the Public Health Service Act to provide for
    a program of screenings and education regarding children
    with sudden cardiac arrhythmia syndromes.
    Be it enacted by the Senate and House of Representa- 1
    tives of the United States of America in Congress assembled, 2
    SECTION 1. SHORT TITLE. 3
    This Act may be cited as the ‘‘Teague Ryan Sudden 4
    Child Cardiac Arrhythmia Syndromes Screening and Edu- 5
    cation Act of 2005’’. 6
    F:\V9\012505\012505.267 (309155|5)
    January 25, 2005 (4:07 PM)
    ____________
    2
    H.L.C.
    SEC. 2. FINDINGS. 1
    The Congress finds as follows: 2
    (1) Each month between 250 and 600 young 3
    people in the United States die suddenly and unex- 4
    pectedly from cardiac arrhythmia syndromes. 5
    (2) These syndromes include long Q-T syn- 6
    drome, hypertrophic cardiomyopathy, arrhymogenic 7
    right ventricular dysplasia, and others. 8
    (3) Long Q-T syndrome is more common in the 9
    United States than childhood leukemia. 10
    (4) Most cardiac arrhythmia syndromes that 11
    cause sudden death in the young are identifiable 12
    through screenings. 13
    (5) Once diagnosed, these syndromes are treat- 14
    able, and individuals with these conditions can have 15
    normal life spans and life-styles. 16
    SEC. 2. SCREENINGS AND EDUCATION REGARDING CHIL- 17
    DREN WITH SUDDEN CARDIAC ARRHYTHMIA 18
    SYNDROMES. 19
    Part B of title III of the Public Health Service Act 20
    (42 U.S.C. 243 et seq.) is amended by inserting after sec- 21
    tion 317S the following section: 22
    F:\M9\MCCART\MCCART_009.XML
    F:\V9\012505\012505.267 (309155|5)
    January 25, 2005 (4:07 PM)
    ____________
    3
    H.L.C.
    ‘‘SEC. 317T. SCREENINGS AND EDUCATION REGARDING 1
    CHILDREN WITH SUDDEN CARDIAC AR- 2
    RHYTHMIA SYNDROMES. 3
    ‘‘(a) IN GENERAL.—The Secretary, acting through 4
    the Director of the Centers for Disease Control and Pre- 5
    vention, may make awards of grants or contracts to 6
    States, political subdivisions of States, and other public 7
    or nonprofit private entities, such as the Cardiac Arrhyth- 8
    mias Research and Education Foundation, the Sudden Ar- 9
    rhythmia Death Syndromes Foundation, and the Hyper- 10
    trophic Cardiomyopathy Association, for the purpose of 11
    carrying out programs— 12
    ‘‘(1) to screen children for sudden cardiac ar- 13
    rhythmia syndromes; 14
    ‘‘(2) to provide referrals for medical services re- 15
    garding such syndromes; and 16
    ‘‘(3) to provide education on such syndromes to 17
    health professionals and the general public, including 18
    education on screening methods. 19
    ‘‘(b) PRIORITY IN MAKING AWARDS.—In making 20
    awards under subsection (a), the Secretary shall give 21
    priority— 22
    ‘‘(1) to screenings and referrals under such 23
    subsection for children who participate in, or intend 24
    to participate in, organized sports; and 25
    F:\M9\MCCART\MCCART_009.XML
    F:\V9\012505\012505.267 (309155|5)
    January 25, 2005 (4:07 PM)
    ____________
    4
    H.L.C.
    ‘‘(2) to educational activities under such sub- 1
    section that are directed toward parents of children 2
    described in paragraph (1) and health professionals 3
    who commonly provide medical care for such chil- 4
    dren. 5
    ‘‘(c) TECHNICAL ASSISTANCE.—The Secretary may 6
    provide technical assistance to grantees under subsection 7
    (a) with respect to the planning, development, and oper- 8
    ation of programs under such subsection. The Secretary 9
    may provide such technical assistance directly or through 10
    grants or contracts. 11
    ‘‘(d) EVALUATIONS.—The Secretary, directly or 12
    through grants or contracts, shall provide for evaluations 13
    of programs under subsection (a) in order to determine 14
    the quality and effectiveness of the programs. 15
    ‘‘(e) DEFINITION.—For purposes of this section, the 16
    term ‘children’ means individuals under the age of 19. 17
    ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—For the 18
    purpose of carrying out this section, there are authorized 19
    to be appropriated $20,000,000 for fiscal year 2006, and 20
    such sums as may be necessary for each of the fiscal years 21
    2007 through 2010.’’. 22
    F:\M9\MCCART\MCCART_009.XML
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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