Raising Rare - a Column by Jennifer Chamberlain

Jennifer is is a wife and the mother of two. Her youngest child was diagnosed with cystic fibrosis while in the NICU. Jennifer has always been passionate about writing, majoring in English in college and teaching a creative writing workshop to middle school students upon graduation. She went on to receive her law degree and is currently a practicing attorney. A Southern California native, you can find her at the beach, planning her next trip, or teaching Pilates in her free time.

When the Holidays Aren’t Merry and Bright

Every night when I came home from caring for our daughter in the neonatal intensive care unit (NICU), I would gather our mail to sort through it. It was a task I used to distract myself and make life seem a little more normal. As the holiday season approached, I…

The Unpredictability of CF Taught Me How to Let Go

“How is this possible? We did everything right!” I couldn’t comprehend what my daughter Claire’s pulmonologist was telling me at her quarterly cystic fibrosis (CF) clinic visit. He explained that her most recent chest X-rays showed signs of disease progression. She was only 2 years old. Up until that…

A Conversation With Rare Disease Advocates

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