Monthly Archives: October 2022

  23 years ago, this past March my husband, Jim and I lost our firstborn, Corey to Niemann-Pick Type A Disease, a severe and currently incurable neurodegenerative disorder.    Corey passed away at the young age of 2 ½. Today, Corey would have been 25 years old. While the years have passed, and time has

October 20, 2022
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  Twenty-six years ago, our father was diagnosed with Gaucher disease. A “simple” broken shoulder turned into years of getting the wrong treatments and one false diagnosis after another until one doctor encouraged further genetic testing. It was at that point, Gaucher disease became a huge part of our family. For the last twenty-six years,

October 4, 2022
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