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An online petition to Indian Health Minister
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Thread: An online petition to Indian Health Minister

  1. #1
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    An online petition to Indian Health Minister

    Hi friends.
    I have started an online petition to be submitted to our Indian Central Health Minister to take care of Enzyme Replacement Therapy for MPS II or Hunter Syndrome patients. This is all about to get maximums supporters from all over the world to make the petition stronger and logical. Please note that ERT for MPS II, Elaprase or Idursulfase is not available in India. Also the medicine is not registered in India. And as a result my son Arian is not getting any treatment.

    Please find the link of the petition as below;
    http://www.change.org/en-IN/petition...huntersyndrome

    I request all of you please sign it and forward it to your friends to sign. Thanks in advance for your effort.

    My prayer with you....
    Sib Sankar
    - father to Arian (MPS II)

    Nothing in this world is impossible to a willing heart
    Facebook : Sib Sankar Chowdhury

  2. #2
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    I signed it, and I will pass it along. I hope that you can get ERT for your son!
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  3. #3
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    I signed it too. Will pass it along to friends as well.
    Lots of love and good wishes
    Elizabeth, Peter, Daniel (MPSIIIA born Jan 91) and Samuel (born Nov 93)and Anna Nigina (born Nov 01)
    'I shall not die, but live and tell of the works of the Lord' Psalm 118 v. 1
    Video about Daniel and Sanfilippo,http://www.youtube.com/watch?v=RPG4w92RgbI
    Daniel's web site: http://www.caringbridge.org/visit/danielschuepbach

  4. #4
    Forum Helper - Moderator
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    I have signed it too. Looks like it is getting some good support
    Sandi

    Mum to
    Shannae MPS1 - Hurler Scheie, 6 years old, diagnosed June 2011
    Talia, 7 years old, unaffected

    Our blog Around The Bend

  5. #5
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    I have signed the petition and shared it on facebook too.

    Kasturi Rangan
    Father of Vidya , 18 years MPS III ( Sanfilipo)
    Bangalore
    India.
    Vidya, my daughter ,aged 19 years is MPS III. Thanks for your support.

    Please visit

    http://www.caringbridge.org/visit/vidya

  6. #6
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    Thank you all

    Thanks to all of you Robin, Elizabeth, Sandi, Kasturi. God bless you and your family.

    My prayer with you....
    Sib Sankar
    - father to Arian (MPS II)

    Nothing in this world is impossible to a willing heart
    Facebook : Sib Sankar Chowdhury

  7. #7
    Forum Committee - Moderator
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    Do keep us updated Sib on how it is going. It may be quite a fight but if we can support you any way we can.
    Lots of love and good wishes
    Elizabeth, Peter, Daniel (MPSIIIA born Jan 91) and Samuel (born Nov 93)and Anna Nigina (born Nov 01)
    'I shall not die, but live and tell of the works of the Lord' Psalm 118 v. 1
    Video about Daniel and Sanfilippo,http://www.youtube.com/watch?v=RPG4w92RgbI
    Daniel's web site: http://www.caringbridge.org/visit/danielschuepbach

  8. #8
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    Quote Originally Posted by Elizabeth Schuepbach View Post
    Do keep us updated Sib on how it is going. It may be quite a fight but if we can support you any way we can.
    Hi Elizabeth, the petition is going well and have received 47600+ signs so far but we need more before submitting to the Health Minister. I have also started crowd-funding thru http://www.indiegogo.com/projects/help-arian-live to raise funds for the future but response is very poor. I will keep you posted, please continue your support so that we can fight and Arian gets ERT. Thanks a lot. Take care

    My prayer with you....
    Sib Sankar
    - father to Arian (MPS II)

    Nothing in this world is impossible to a willing heart
    Facebook : Sib Sankar Chowdhury

  9. #9
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    I sign the petition hopes and prayers that your goverment will listen and that you will get good result very soon.
    Carol
    Aunt and Guardian:
    Karima (5-31-88) Age 24
    MPS VI Maroteaux-Lamy

  10. #10
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    Quote Originally Posted by carkarrucker View Post
    I sign the petition hopes and prayers that your goverment will listen and that you will get good result very soon.
    Thanks a lot. God bless you. Please be with our plight

    My prayer with you....
    Sib Sankar
    - father to Arian (MPS II)

    Nothing in this world is impossible to a willing heart
    Facebook : Sib Sankar Chowdhury

  11. #11
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    I saw the IBN-CNN television channel prominently highlighting Arian's case and the need for the Govt of India to subsidise the drug required for the treatment.

    I sincerely hope Arian will get the best of treatments.

    http://ibnlive.in.com/news/help-pour.../478711-3.html
    Vidya, my daughter ,aged 19 years is MPS III. Thanks for your support.

    Please visit

    http://www.caringbridge.org/visit/vidya

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