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.
CLICK BELOW TO VIEW OUR TESTIMONY:
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.
ReplyDeleteGod 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
ReplyDeletePhyllis Kownacki
Lawrenceville NJ
Congratulations on the passing of THE bill! What an amazing accomplishment!
ReplyDeleteThis is a worthy cause everyone who can help should...
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