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Community Advocates

In order to stay up to date on latest treatments, drug discovery, clinical studies and how to cope with cystic fibrosis every day, Cystic-Fibrosis.com brings you frequent articles, points of view and advice from leading patient advocates and experts.

Current advocates

Joel Barlow

Joel Barlow is a retired software engineer and father of a 28 year old daughter living with CF. In 1994 his diagnosis of Non-Hodgkins Lymphoma was sobering. His own diagnosis, however, paled in comparison to his daughter’s Cystic Fibrosis diagnosis a year later. Read more

Megan Barlow

Megan Barlow was diagnosed with Cystic Fibrosis at 5 years old. After her diagnosis, her life was changed forever: doctors visits, nebulizers, vest treatments and more became her “normal” routine. Now at 28, she doesn’t let her disease stand in her way. Read more

Kenny Boutot

Kenny was diagnosed with CF (double delta f508) at 7 months old in 1988. In the time since his diagnosis, he has worked diligently to maintain his health and lead a fairly traditional life through dedication to regimented treatments, pills, exercise, and lots of luck. Read more

Craig Konowal

My name is Craig Konowal, I was diagnosed at birth with cystic fibrosis. The reason the doctor’s tested me immediately is because I had a sister before me who was born with Cf and passed away. I am 30 yrs old. Read more

Cheriz Kunkel

Cheriz Kunkel is a wife, foster parent, and living with cystic fibrosis. She was diagnosed at birth after being born 12 weeks early with an intestinal blockage. She takes over 30+ pills a day and does 7-10 breathing treatments a day to stay healthy. Even though she considers her health stable at 48% lung function, she has been hospitalized over 65+ times and has had over a dozen surgeries. It is her own experiences that led her to become an advocate for the CF community. Read more

Kynsie Riedel

Kynsie Riedel is a Cystic Fibrosis patient from Vancouver, Washington. Kynsie was diagnosed with CF at 8 months old, after failing to gain weight and grow at a healthy rate. The doctors informed her family that the test was “just to rule it out,” but instead, it confirmed the diagnosis. Read more

J.Kaye Riley

Jennifer “J.Kaye” Riley is a proud member of the unofficial CF “over 40 club” and was treated off and on for cystic fibrosis throughout her childhood, until genetic mapping was able to definitively identify her mutations in the mid 1990’s. Read more

Noreen Tarletsky

Noreen Tarletsky has been an active volunteer with the Cystic Fibrosis Foundation since her son, Alex, was diagnosed in 1995. While chairing, participating, and speaking at a variety of chapter events across the nation, Noreen is dedicated to ensuring that the promise she and her husband made upon Alex’s diagnosis is one day a reality; a cure for cystic fibrosis. Read more

Lauren Weeks

Lauren Bombardier Weeks is an adult with cystic fibrosis who is thriving with cystic fibrosis thanks to a life changing treatment and the benefits of exercise. She is the author of the book Growing Up Sick, and writes The So What Life blog. Read more

Janeil Whitworth

Janeil Whitworth is a 29-year-old Cleveland, OH native living with cystic fibrosis. Diagnosed at the age of four, Janeil enjoyed a relatively healthy childhood until she was met with the progressive nature of CF in college and her health began to decline. Read more

Meghan Wilson

Meghan Wilson is a loving wife and stay-at-home mom to two little ones. She’s the only lady in the house, but doesn’t mind being outnumbered by her handsome guys! While she’s not new to the mom-lifestyle, she is new to the world of Cystic Fibrosis since becoming a caretaker to her little “double Delta” warrior born in 2018. Read more

Steve Wilson

Steve is a husband and father of two awesome sons, the youngest of whom has cystic fibrosis. Since his youngest son was born, Steve and his wife have been dedicated to being the best possible CF advocates they can be. Read more

With the exception of medical doctors, contributors and moderators at Cystic-Fibrosis.com are compensated for their contributions to the Cystic-Fibrosis.com community. If you are interested in joining our team, please contact us at [email protected].