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AMCSupport 3rd Annual Convention - Register Today!

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  • Lala
    With a condition so rare that only one in 3000 babies born have this muscular disorder it s easy to comprehend how alienated anyone with Arthrogryposis
    Message 1 of 3 , May 1, 2008
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      With a condition so rare that only one in 3000 babies born have this
      muscular disorder it's easy to comprehend how alienated anyone with
      Arthrogryposis Multiplex Congenita (AMC) must feel. Through the hard
      work of one mother's vision and an army of members, the AMC Support
      group has helped bridge the gap with the power of the internet. It is
      not only the group's mission to provide and encourage a greater
      understanding and awareness of this condition, but also to provide a
      support system. To help those that have felt all their lives an
      outcast or alone, meet others who have lived that same life, to meet
      other families who have the same concerns and to provide a resource of
      information.

      But meeting on-line is not enough. It's hard to explain to a mom
      exactly how another mom has taught her child to sit up without the use
      of his arms, or how one child learned to stand. What so many people
      take for granted: the ease of walking, typing, eating and breathing
      those with AMC have had to struggle to adapt to this world. Our
      conventions solidify that bridge and strengthen the bond of our AMC
      family. Once a year we come together, charge NO admission fee, bring
      professionals, doctors, physical therapists, occupational therapists,
      provide workshops and invite people throughout the world to learn,
      share, laugh, cry and grow.

      3rd Annual AMCSupport Convention
      Dublin, Ohio ~ USA
      July 17-20 2008

      Convention Overview

      A Convention in Support of Families Affected by Arthrogryposis
      Multiplex Congentia.

      Target Audience: The target audience of this convention are parents
      and caregivers of children with AMC, adults with AMC, physicians,
      physical therapists, occupational therapists, early interventionists
      and any others interested in learning more about Arthrogryposis
      Multiplex Congenita.

      Purpose: The purpose of this convention is to increase awareness of
      AMC. Expand the knowledge of parents and professionals about this rare
      disorder. To provide families comfort, support and hope through other
      parent's journeys and through the encouraging life stories of Adults
      with Arthrogryposis.

      Objectives: To help children, teens and adults with Arthrogryposis
      reach their fullest potential through the education of parents,
      professionals and the public.

      Speakers/Workshops/Activities
      Dr. Harold Van Bosse- director for the Arthrogryposis Center at The
      Center for Children at The New York University Hospital for Bone and
      Joint Disease.

      Dr. Pappas and Ellen Moran- Genetics of New York University

      Rick Guidotti- Positive Exposure Photography-
      http://www.positiveexposure.org

      Tanya Fernandez - Adult with Arthrogryposis and disability advocate
      http://gcpd.ohio.gov/roster.asp#Fernandez

      Ward Foley- Adult with Arthrogryposis and published Author
      http://www.wardfoley.com/

      Maureen Casey - IEP and Special Education-Parent of a child with AMC

      BBQ at Miracle League Field and Miracle Playground - Fully accessible
      baseball field and playground
      http://www.ohiomiracleleague.org/

      Painting with Theresa- Hands on painting with Theresa Lucas-an artist
      with AMC
      http://www.hometown.aol.com/terry2745/index.html

      Canine Companions for Independence- assistance dogs for people with
      Disabilities
      http://cci.org/northcentral/index.html

      Steve Balistreri- massage therapist who has treated his 7 year old son
      with AMC since birth

      Christina Battista- Cash and Counseling

      Heather Perrow- Adaptive Dance

      AMCSI BOD Public Meeting

      Columbus Mobility Specialist- http://www.columbusmobility.com/

      MetDesk – Special Needs Trusts and Estate Planning
      http://www.metlife.com/Applications/Corporate/WPS/CDA/PageGenerator/0,1674,P475,00.html

      We are working on securing more speakers but we cannot release their
      names until they have confirmed their attendance and participation.

      Cost to Attend: This convention is free for anyone but registration is
      required!

      Although we do not charge a registration fee to attend convention, we
      need your help! Please consider either making a personal donation or
      organize a project to raise funds. All donations are tax deductible!
      Arthrogryposis Multiplex Congenita Support, Inc. is a 501 (c) (3) Non
      Profit corporation, registered with the United States Internal Revenue
      Service. If you would like to fund raise for the convention but need
      ideas on how to do so, please contact Ohio@.... We also
      sell AMC wristbands for the purpose of awareness and raising funds for
      the convention. To purchase a wristband or make a tax deductible
      donation, please go to: www.amcsupport.org


      Checks may be sent to
      Arthrogryposis Multiplex Congenita Support Inc
      P.O. Box 1883
      Salyersville, Ky 41465

      The AMCSI Board of Directors will not ask the speakers, presenters, or
      vendors attending our Third Annual AMCSupport Convention to provide
      one-on-one meetings, consultations, or any other specific medical
      recommendations to you, your child, or your family.

      Furthermore, any and all medical information, therapeutic techniques,
      etc., obtained while in attendance should promptly be consulted with
      your/your child's physician prior to any form of implementation.
      We will not be responsible for ANY medical advice provided to you
      while at our convention or the result thereof. Any and all of our AMC
      Support Conventions are strictly a gathering for educational and
      recreational purposes until stated otherwise.

      Want to learn more or register for the convention? Complete the
      questionnaire by visiting http://www.amcsupport.org/ohio
      You will be added to our database and will receive the newest
      information on the convention via email. Completing this form will
      also allow you to receive information regarding the location of the
      convention as well as how to book a room at a discounted rate.
      If you have already completed the questionnaire you should have
      received an email today (May 1st) to complete your registration for
      the convention. If you have not received this email, please let us
      know by emailing ohio at amcsupport.org

      Thank you for your time reading this long winded email! I look
      forward to seeing you all at the 3rd Annual AMCSupport Convention in July!

      View pictures from our AMC Convention 2006 & 2007
      http://www.amcsupport.org/convention2006.htm
      http://www.amcsupport.org/texas.htm

      Become a member of AMCSI http://www.amcsupport.org/member
      Join our message boards http://www.amcsupport.org/forum/
      Chat with us http://www.amcsupport.org/chat
      First Thurs of every month 11am & 8pm EST

      Ani S. Vinson
      Founder
      Arthrgryposis Multiplex Congenita Support Inc.
      Board of Directors
      http://www.amcsupport.org/bod
    • Syed Rasul
      Dear Lala Are you from amcsupport. org. i am a member there also.i can t afford to come although really want but it costs me a fortune.but for my sake please
      Message 2 of 3 , May 2, 2008
      • 0 Attachment
        Dear Lala
        Are you from amcsupport. org. i am a member there also.i can't afford to come although really want but it costs me a fortune.but for my sake please raise this issue that there are ppl around the world who can't really do any thing for their kids because of money.
        thank you
        Lala <ani@...> wrote: With a condition so rare that only one in 3000 babies born have this
        muscular disorder it's easy to comprehend how alienated anyone with
        Arthrogryposis Multiplex Congenita (AMC) must feel. Through the hard
        work of one mother's vision and an army of members, the AMC Support
        group has helped bridge the gap with the power of the internet. It is
        not only the group's mission to provide and encourage a greater
        understanding and awareness of this condition, but also to provide a
        support system. To help those that have felt all their lives an
        outcast or alone, meet others who have lived that same life, to meet
        other families who have the same concerns and to provide a resource of
        information.

        But meeting on-line is not enough. It's hard to explain to a mom
        exactly how another mom has taught her child to sit up without the use
        of his arms, or how one child learned to stand. What so many people
        take for granted: the ease of walking, typing, eating and breathing
        those with AMC have had to struggle to adapt to this world. Our
        conventions solidify that bridge and strengthen the bond of our AMC
        family. Once a year we come together, charge NO admission fee, bring
        professionals, doctors, physical therapists, occupational therapists,
        provide workshops and invite people throughout the world to learn,
        share, laugh, cry and grow.

        3rd Annual AMCSupport Convention
        Dublin, Ohio ~ USA
        July 17-20 2008

        Convention Overview

        A Convention in Support of Families Affected by Arthrogryposis
        Multiplex Congentia.

        Target Audience: The target audience of this convention are parents
        and caregivers of children with AMC, adults with AMC, physicians,
        physical therapists, occupational therapists, early interventionists
        and any others interested in learning more about Arthrogryposis
        Multiplex Congenita.

        Purpose: The purpose of this convention is to increase awareness of
        AMC. Expand the knowledge of parents and professionals about this rare
        disorder. To provide families comfort, support and hope through other
        parent's journeys and through the encouraging life stories of Adults
        with Arthrogryposis.

        Objectives: To help children, teens and adults with Arthrogryposis
        reach their fullest potential through the education of parents,
        professionals and the public.

        Speakers/Workshops/Activities
        Dr. Harold Van Bosse- director for the Arthrogryposis Center at The
        Center for Children at The New York University Hospital for Bone and
        Joint Disease.

        Dr. Pappas and Ellen Moran- Genetics of New York University

        Rick Guidotti- Positive Exposure Photography-
        http://www.positiveexposure.org

        Tanya Fernandez - Adult with Arthrogryposis and disability advocate
        http://gcpd.ohio.gov/roster.asp#Fernandez

        Ward Foley- Adult with Arthrogryposis and published Author
        http://www.wardfoley.com/

        Maureen Casey - IEP and Special Education-Parent of a child with AMC

        BBQ at Miracle League Field and Miracle Playground - Fully accessible
        baseball field and playground
        http://www.ohiomiracleleague.org/

        Painting with Theresa- Hands on painting with Theresa Lucas-an artist
        with AMC
        http://www.hometown.aol.com/terry2745/index.html

        Canine Companions for Independence- assistance dogs for people with
        Disabilities
        http://cci.org/northcentral/index.html

        Steve Balistreri- massage therapist who has treated his 7 year old son
        with AMC since birth

        Christina Battista- Cash and Counseling

        Heather Perrow- Adaptive Dance

        AMCSI BOD Public Meeting

        Columbus Mobility Specialist- http://www.columbusmobility.com/

        MetDesk – Special Needs Trusts and Estate Planning
        http://www.metlife.com/Applications/Corporate/WPS/CDA/PageGenerator/0,1674,P475,00.html

        We are working on securing more speakers but we cannot release their
        names until they have confirmed their attendance and participation.

        Cost to Attend: This convention is free for anyone but registration is
        required!

        Although we do not charge a registration fee to attend convention, we
        need your help! Please consider either making a personal donation or
        organize a project to raise funds. All donations are tax deductible!
        Arthrogryposis Multiplex Congenita Support, Inc. is a 501 (c) (3) Non
        Profit corporation, registered with the United States Internal Revenue
        Service. If you would like to fund raise for the convention but need
        ideas on how to do so, please contact Ohio@.... We also
        sell AMC wristbands for the purpose of awareness and raising funds for
        the convention. To purchase a wristband or make a tax deductible
        donation, please go to: www.amcsupport.org

        Checks may be sent to
        Arthrogryposis Multiplex Congenita Support Inc
        P.O. Box 1883
        Salyersville, Ky 41465

        The AMCSI Board of Directors will not ask the speakers, presenters, or
        vendors attending our Third Annual AMCSupport Convention to provide
        one-on-one meetings, consultations, or any other specific medical
        recommendations to you, your child, or your family.

        Furthermore, any and all medical information, therapeutic techniques,
        etc., obtained while in attendance should promptly be consulted with
        your/your child's physician prior to any form of implementation.
        We will not be responsible for ANY medical advice provided to you
        while at our convention or the result thereof. Any and all of our AMC
        Support Conventions are strictly a gathering for educational and
        recreational purposes until stated otherwise.

        Want to learn more or register for the convention? Complete the
        questionnaire by visiting http://www.amcsupport.org/ohio
        You will be added to our database and will receive the newest
        information on the convention via email. Completing this form will
        also allow you to receive information regarding the location of the
        convention as well as how to book a room at a discounted rate.
        If you have already completed the questionnaire you should have
        received an email today (May 1st) to complete your registration for
        the convention. If you have not received this email, please let us
        know by emailing ohio at amcsupport.org

        Thank you for your time reading this long winded email! I look
        forward to seeing you all at the 3rd Annual AMCSupport Convention in July!

        View pictures from our AMC Convention 2006 & 2007
        http://www.amcsupport.org/convention2006.htm
        http://www.amcsupport.org/texas.htm

        Become a member of AMCSI http://www.amcsupport.org/member
        Join our message boards http://www.amcsupport.org/forum/
        Chat with us http://www.amcsupport.org/chat
        First Thurs of every month 11am & 8pm EST

        Ani S. Vinson
        Founder
        Arthrgryposis Multiplex Congenita Support Inc.
        Board of Directors
        http://www.amcsupport.org/bod






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      • TERRY2745@AOL.COM
        Hello , _syed_rasul_engr@yahoo.com_ (mailto:syed_rasul_engr@yahoo.com) Im Theresa, Amcsupport.org vice president. We totally understand that there are a lot
        Message 3 of 3 , May 2, 2008
        • 0 Attachment
          Hello , _syed_rasul_engr@..._ (mailto:syed_rasul_engr@...)
          Im Theresa, Amcsupport.org vice president. We totally understand that there
          are a lot of families affected with AMC that cannot afford to attend the AMC
          Convention because of the cost of Travel, hotel, food. AMCSI offers this
          convention free of charge (no admittance fee) & We offer the forums free of
          charge for that reason!
          ~Theresa
          my webpage--> _www.hometown.aol.com/terry2745/index.html_
          (http://www.hometown.aol.com/terry2745/index.html)




          Art Association of Madison County, Inc. ~Student Exhibition Coordinator
          Arthrogryposis Multiplex Congenita Support, Inc~Vice President
          _www.amcsupport.org_ (http://www.amcsupport.org/)
          BECOME A MEMBER OF AMCSI _www.amcsupport.org/member_
          (http://www.amcsupport.org/member)

          In a message dated 5/2/2008 2:33:40 PM Eastern Daylight
          Time,_syed_rasul_engr@..._ (mailto:syed_rasul_engr@...) writes:

          Dear Lala
          Are you from amcsupport. org. i am a member there also.i can't afford to
          come although really want but it costs me a fortune.but for my sake please raise
          this issue that there are ppl around the world who can't really do any thing
          for their kids because of money.
          thank you








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