In 2014, Philip and I founded the Chloe's Fight Rare Disease Foundation whose mission it is to fund research that finds treatments for rare and underfunded diseases such as metachromatic leukodystrophy. We are often called heroes but we aren't.
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It's hard not to be angry and bitter when people ask, "So, what are you doing for your daughter's birthday?" So, for now, I will keep writing and selling cupcakes.
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