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Off to Washington DC!

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Lisa Salberg
Lisa Salberg
HCMA CEO and Founder
Find out more about Lisa Salberg
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    Lisa Salberg
    HCMA CEO and Founder

  • Lisa Salberg
    replied
    Re: Off to Washington DC!

    Sharon and all,

    The Teague Ryan Bill was brought to the floor after the death of a 6 yr. old boy from Long Island, it is thought at this time that the cause of death was Long Q-T - although this is not 100% confirmed at this time. Thus the mention of Long Q-T prior to HCM in the draft.
    This bill is flawed in one major area - the age it suggests focusing on -children 6 and under.
    Through discussion this verbage will be changed in the new bill that will be brought before the 109th Congress in January 2005.
    This is not a bill with a single focus of 'screenings' this is an education and awareness bill that includes screenings. ALL of which are important to the ultimate goal of protecting our young people from ALL forms of sudden death. The HCMA is proud to join with other organizations such as SADS, National Center for Early Defibrillation, Acompora Foundation, and many other organizations (Of course the Anthony Bates Foundation!)ALL with the goal of saving lives that would have othewise been lost to sudden death.

    TOGETHER we will have a better chance at raising awareness and changing the way the world views SD - especially in the young.

    Below is the complete bill

    Best wishes to all!
    Lisa


    H.L.C.
    .................................................. ...................
    (Original Signature of Member)
    108TH CONGRESS
    2D 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 of New York 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 6
    F:\M8\MCCANY\MCCANY_039.XML

    SEC. 2. FINDINGS.
    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:\V8\042704\042704.011
    April 27, 2004
    ____________
    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, for the purpose 9
    of carrying out programs— 10
    ‘‘(1) to screen children for sudden cardiac ar- 11
    rhythmia syndromes; 12
    ‘‘(2) to provide referrals for medical services re- 13
    garding such syndromes; and 14
    ‘‘(3) to provide education on such syndromes to 15
    health professionals and the general public, including 16
    education on screening methods. 17
    ‘‘(b) PRIORITY IN MAKING AWARDS.—In making 18
    awards under subsection (a), the Secretary shall give 19
    priority— 20
    ‘‘(1) to screenings and referrals under such 21
    subsection for— 22
    ‘‘(A) children under the age of 6; and 23 to be changed‘‘(B) children who participate in, or intend 24
    to participate in, organized sports; and 25
    F:\M8\MCCANY\MCCANY_039.XML
    F:\V8\042704\042704.011
    April 27, 2004
    ____________
    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 2005, and 20
    such sums as may be necessary for each of the fiscal years 21
    through 22
    F:\M8\MCCANY\MCCANY_039.XML

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  • Linda
    Super Moderator

  • Linda
    replied
    Re: Off to Washington DC!

    Great work, Sharon, Lisa and Kelly! Linda

    Leave a comment:

  • SharonBates
    Barely Heart

  • SharonBates
    replied
    Re: Off to Washington DC!

    Before Lisa went to Washington for this wonderful meeting, I had done a little research myself. After I returned from the HCMA Annual Meeting I found on the web the full resolution, HR 4335. (A fact Sheet was included in the HCMA Annual Meeting packet) Congresswoman Carolyn McCarthy, NY had introduced the resolution. I found the full language of the bill on another website and printed it out. As an expert on heart screenings (yes, I can call myself that after three years of putting together free heart screening events - event #7 will take place in Phoenix, August 28th & event #8 will be in Manhattan, KS, October 10th) I found this resolution inadequate to uncover the leading killer of Sudden Cardiac Death (HCM) in our children - 36% of those deaths are caused from HCM. This resolution was created to screen children under 6 & children that participate in sports. Well, as most of you know HCM does not usually show itself until the teen to young adult stages of life. Mainly HR 4335 was created to screen for Long QT and arrhythmia issue that affects 1 in 7000 people. We need help stopping the #1 killer of young people, HCM, as this condition affects 1 in 500 people.

    As an aggressive person, I thought I should help with the language of this bill and offer my support in anyway possible to correct some of the miss-information. By the end of June I was on the phone to the Congresswoman's office and by the beginning of July I had a very nice conversation with the Congresswoman's aid, Ms. DeRossa. She informed me that over the past few months they have received additional information that the language of the resolution needs to be modified. I offered my support and involvement in anyway that I could help. So, I sent their office a box full of the HCMA info, Anthony Bates Foundation information, a couple of my videos, "What is HCM?" and a couple dozen cookies...hoping that the treats will encourage support.

    Now it's Lisa's turn to direct us in the best action & plan of attack to help make a "heart screening" law possible! We can all do our part, but it's better if we work together & in the same direction. As I said earlier, our stories will open the hearts of many! Let us be heard!

    Best Regards,
    Sharon

    Leave a comment:

  • Glen Beamish
    Super Contributor

  • Glen Beamish
    replied
    Re: Off to Washington DC!

    WOW, sound like you made some really great in roads.
    Good luck

    Leave a comment:

  • Lisa Salberg
    HCMA CEO and Founder

  • Lisa Salberg
    replied
    Re: Off to Washington DC!

    Photos are available on in the photo album!

    Lisa

    Leave a comment:

  • Sarah
    Brave Heart

  • Sarah
    replied
    Re: Off to Washington DC!

    Thank you Lisa, for saving so many lives, for opening so many eyes, and treating so many hearts.

    We love you!!!

    Sarah

    Leave a comment:

  • Lisa Salberg
    HCMA CEO and Founder

  • Lisa Salberg
    replied
    Re: Off to Washington DC!

    Back in NJ! What a great day!

    The HCMA has joined a new alliance of other organizations with the goal of raising awareness of sudden death. This alliance will be focusing on furthering efforts on legistation issues to begin with. YOU will be called to action when items require YOUR attention and the attention of your elected officials!!

    Kelly and I met with Congresswoman C. McCarthy of NY. (picture to be posted soon on the photo album). I will be sending a complete report soon on this meeting and what YOU can do to help!!

    It was a great day and a great start at raising awareness at a completely different level - hang on to your seats ...its gonna be a wild ride

    Best wishes!
    Lisa

    Leave a comment:

  • angall
    Member of 1000 Post Club!

  • angall
    replied
    Re: Off to Washington DC!

    Hi Lisa

    I know you will do your best today. You can count me in for helping in anyway. My email address is listed, send me an email and I will give you my phone #.
    Maybe you will need people from different states? I am from Minnesota and I'm ready to help all that has been diagnosed and others that will be diagnosed with this horrible disease.
    You GO GIRL!!

    All my blessings

    Leave a comment:

  • shirleymahoney
    Brave Heart

  • shirleymahoney
    replied
    Re: Off to Washington DC!

    Me too Lisa, anything i can do to help all you have to do is ask, and i will do what ever is nessasary to help, just tell them like it is and it could happen to them or one of there loved ones

    Shirley

    Leave a comment:

  • SharonBates
    Barely Heart

  • SharonBates
    replied
    Re: Off to Washington DC!

    Have a great trip (I know you are already on your way)! My thoughts & prayers will be with you and Kelly today. Our stories are the key to unlocking the hearts of many in Washington. You have the floor my dear, it's time to use it to our benefit.

    Let us know how we can help. You can count on me for my full support and involvement.

    Blessings for a wonderful trip!
    Sharon

    Leave a comment:

  • Lisa Salberg
    HCMA CEO and Founder

  • Lisa Salberg
    replied
    Re: Off to Washington DC!

    Laura,
    I will surely do just that!

    Your voices will be heard!!

    Lisa

    Leave a comment:

  • Laura
    Junior Contributor

  • Laura
    replied
    Re: Off to Washington DC!

    Have a great & fulfilling trip!

    Thanks for all you all do!

    Give them our stories,let them know US.



    Godspeed
    Laura

    Leave a comment:

  • Lisa Salberg
    HCMA CEO and Founder

  • Lisa Salberg
    replied
    Re: Off to Washington DC!

    Thanks for the l kind note!

    We will fill you in ASAP!

    Lisa

    Leave a comment:

  • Heartmans Wife
    Atria

  • Heartmans Wife
    replied
    Re: Off to Washington DC!

    Lisa-

    Have a great trip and best of luck. I don't know what we'd do without you and Kelly

    Ange

    Leave a comment:

  • shirleymahoney
    Brave Heart

  • shirleymahoney
    replied
    Re: Off to Washington DC!

    Lisa

    We all here will keep our fingers crossed for you guys and take a tour of the White House while you are there it is a one of a kind site and one you will remember for the rest of your life, have fun

    Shirley

    Leave a comment:

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