Friday, March 21, 2014

Reesa Testifies In Front of the Arizona Senate

This week we testified in front of the Arizona Senate Health and Human Services Committee in an effort to get them to pass HB 2491, which would add Krabbe Disease to the newborn screening panel.  We also had the opportunity to meet the Gerlitz family who recently lost their daughter, Parker, to Krabbe.  It was an emotional day but also a postive step towards our goal of having every child born in Arizona tested for this disease.  Treatment options for Krabbe disease are available but early detection is crucial in order to give these children an improved quality of life.  HB 2491 would help insure a timely diagnosis to give every Arizona child the chance at a healthy life and prevent their families from experiencing hopeless heartbreak.

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4 comments:

  1. Thank you so much for fighting for New Born Screening. Not only for Reesa, but for all of us. Your family is in my heart, always.

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  2. God Bless you for all you are doing to help other families so no one has to experience the heartbreak you and your family are going through. Reesa and your entire family are in my thoughts and prayers always. God Bless you Jamie and Sean

    Phyllis Kownacki
    Lawrenceville NJ

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  3. Congratulations on the passing of THE bill! What an amazing accomplishment!

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  4. This is a worthy cause everyone who can help should...

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