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The Founder

Nicole "Colie" Kohr

Celana 🎨: Chels Rosado | Koppig 🎨: Manuela Huber Fisk | Rooker 🎨: Noor Alshalabi | Sui Tui 🎨: Juliette Elton | Omi 🎨: Gus Merlo + Alex Zamora

Short Bio

Nicole “Colie” Kohr (Dec. 30, 1992) is an American author, speaker, and social media personality (@cystic4real). Through her non-profit organization, Colie Creations Inc, Nicole uses different storytelling platforms to advocate for patients and children. On June 14, 2019, when her lung function declined to 11% due to a lifetime with cystic fibrosis (CF), Nicole underwent a bilateral lung transplant at the University of Pennsylvania Hospital. After a lifetime masking her disease, Nicole insisted that her mother and husband share her surgery on social media. Her transparency and the publications that followed touched the lives of thousands, bringing lot of awareness to CF. Now, Nicole is the volunteer engagement chair of the Eastern/Central North Carolina Chapter of the Cystic Fibrosis Foundation. As of March 16, 2024, Nicole’s most popular publication is “My Pants,” a children’s book with illustrations by Chelsea Rosado. It was published on Amazon on May 20, 2021.

Long Bio

Nicole was born in central New Jersey in 1992. Despite being very sick since birth (i.e. back-to-back respiratory infections, painful GI symptoms, failure to thrive), Nicole was not diagnosed with cystic fibrosis (CF) until age five, at which time she weighed a mere 25 pounds. Nicole’s mother, Patty, spent years begging doctors to take a closer look at her daughter’s symptoms, but most doctors chalked it up to new mother syndrome. Nicole was finally diagnosed by a pediatrician at RWJ University Hospital. The doctor asked Patty to lick Nicole’s forehead and confirmed that she was salty. The “lick diagnosis” was validated by an overwhelmingly positive sweat test.

Nicole’s first hospital stay, or “tune up,” began a few days after her diagnosis. The only medications available for CF patients at the time were Pulmozyme and the very recently released Tobi. Each tune up lasted several weeks. Nicole would spend her time watching Shirley Temple videos with her mom, doing fun crafts with Child Life Specialists, and writing. With five years of lung damage and a lack of medicine, Nicole and her mother were told she wouldn’t live to be 10-years-old. Nicole and Patty never accepted this expiration date.

Instead, Nicole went on to thrive in several programs including George Street Playhouse Theater Arts Program, followed by Villagers Theatre Summer Intensives, Broadway Dance Center classes, and several acting intensives in NYC. Nicole loved the stage and was particularly smitten with a children’s theater program called My Name is Matthew, a show for an audience of disabled children. She was a cast member for many years and even received an NJACT Perry Award Nomination for Best Supporting Actress. Identifying first and foremost as a performer, Nicole asked her mother to keep her disease a secret.

When Nicole wasn’t performing on stage, or stubbornly pursuing a straight-A career in school, she was performing for the hospital staff. Time between hospital stays grew shorter, so Nicole had a lot of time to write. Nicole’s playwrighting debuts ranged from D.A.R.E. plays in elementary school to camp-wide productions, so she was not shy about performing her original works for the hospital staff.

Upon her high school graduation, Nicole had to make a tough decision. To B.F.A.? Or, not to B.F.A.? Nicole was ready to soldier on, but her declining FEV1 (forced expiratory volume – a way to measure lung function) disagreed. She decided to major in Public Relations, and won the Abbvie CF Scholarship for undergraduates with a poem called “Fall Risk.”

During Nicole’s junior year, Patty and Nicole received a phone call that Nicole was growing mycobacterium abscessus, one of the deadliest CF infections. Nicole was advised by her care team to take the semester off. Instead, Nicole self-administered several IV’s for seven months, and finished at the top of her class. Nicole, fresh out of college and determined to start her career, accepted a job offer at Princeton Theological Seminary. With a B.A. in public relations and a certification in the theory and practice of child life under her belt, Nicole simultaneously founded Colie Creations LLC, which allowed her to write and self-publish children’s books.

Nicole spent 2018 touring New Jersey, making guest appearances at Barnes and Noble, school assemblies, and classrooms. It was the only time that she revealed to an audience that she had CF. In March of 2019, Nicole was rushed to the ER when she stopped breathing. She was transported by ambulance from RWJ University hospital to the University of Pennsylvania Hospital for a bi-lateral lung transplant evaluation due to “complete antibiotic resistance” and “end stage CF.” In a last stitch effort to share her work with the world, Nicole wrote an email to the Cystic Fibrosis Foundation, sharing a few of the lyrics that had been collecting dust on her computer. She explained that only a handful of people knew that she had CF, so it was a long shot that anyone would take interest.

On May 31, 2019, Nicole received a $10K grant from the CFF to produce her original musical comedy, “Fall Risk.” On June 1, with an FEV1 of 11% and weighing in at 79 pounds, Nicole married Jared Kohr. On June 14, 2019, Nicole received her new lungs. Despite several post-surgery complications, Nicole was discharged to her mother and husband at the Gift of Life Family House within fifteen days, and graduated from outpatient physical therapy within five weeks. Present day, Nicole’s picture is displayed on the front of the building. For the first time, Nicole asked her mother to share and document her story on social media. Nicole was overwhelmed by the outpouring of love that she received from social media, and it inspired a new journey of transparency.

 Nicole and her family relocated to New Bern, North Carolina during the Covid 19 pandemic. Now an award-winning author and patient leader, she is a proud advocate for the cystic fibrosis and #donatelife communities. She is the volunteer engagement chair for the Eastern/Central North Carolina Chapter of the Cystic Fibrosis Foundation, and participates in dozens of AMR panels (and related events) each year. She has hosted several large events including Researchcon, NACFC Highlights, Volunteer Leadership Conference, Great Strides, Pipeline for a Cure, Brewer’s Ball, etc.

Nicole and her family also became registered foster parents in October 2022.

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To book Nicole for a speaking engagement, email info@coliecreations.org.

2022