Nicole Kohr | Vlogger & Cystic Fibrosis Patient Leader

Patient Leader

Hey there! Nicole, otherwise known as @cystic4real or “gross she’s coughing a lot”. Cystic Fibrosis patient and advocate. Double lung transplant recipient 6/14/19. 5 foot with male lungs; sorry gentlemen, I’m taken. Married 6/1/19 to best IT guy ever (if you had any question that I’m a multitasker). Mixed raced mamas girl; Ravenclaw; Capricorn. Self proclaimed comedian. CF Abbvie scholarship winner. Graduated top of my class with B.A. in PR. Worked non-profit in Princeton before activating author/spokesperson mode. Published children’s book author as of 3/1/2018. “Two Cents” available at Barnes&Noble and Amazon! Assemblies and speeches throughout Barnabas Health Network, Barnes and Noble and NJ elementary schools. Super proud of Perry nomination for role of Tigerlily in Peter Pan, participation in “My Name is Matthew Program: Theater For An Audience of Disabled Children”, Writer & Executive Producer of "Fall Risk The Musical", and commitment to noodles. Love you guys; remember to stop and smell the 65 roses.


Somerset, NJ


Hilarious Patient Leader


Best in Show: Twitter

Nicole does not share with everyone that she has Cystic Fibrosis. She maintains a “professional “ Twitter as well as her CF specific Twitter as Cole. She has the strength to show what it is truly like to have CF with other cysters. Nicole wrote an inspirational children’s book, continuing to inspire people.  — Patty

I may be biased in thinking that my daughter is the funniest person on the planet, but the internet (especially Twitter) seems to agree. Everyone compliments her upbeat, quirky vlog and her hilarious sense of humor as she overcomes every obstacle (most recently... a lung transplant evaluation). And she wrote a book and a musical in her spare time.  — Patty

Nicole Kohr | Vlogger & Cystic Fibrosis Patient Leader

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