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Asian American Medical Society

Ms. Stacy Pike-Langenfeld, cofounder of the Krabbe disease advocacy KrabbeConnect, gave birth to her daughter Makayla in 2001. Makayla “was perfect until she wasn’t”—Krabbe disease visited her at 3.5 months of age and took her away at the age of 2.

“There are no words that capture the vileness of infantile Krabbe disease. Absolutely none,” said Ms. Pike-Langenfeld.

20 years after the tragedy, hope has finally emerged for Ms. Pike-Langenfeld: her home state, Minnesota, has started universal newborn screening for Krabbe disease in February 2024.

Find my infographic on Krabbe Disease, completed in February-March 2024, in the attachments. You may also access it here. To raise awareness of this disease, you are welcome to share this infographic with more people!


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