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Off to Washington DC!

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Lisa Salberg Find out more about Lisa Salberg
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  • #16
    Re: Off to Washington DC!

    WOW, sound like you made some really great in roads.
    Good luck
    Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
    So if you are capable of thought then you are capable of great things
    Good luck and stay well.
    Glen

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    • #17
      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

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      • #18
        Re: Off to Washington DC!

        Great work, Sharon, Lisa and Kelly! Linda

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        • #19
          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
          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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