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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