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

Ella Balasa

Ella Balasa is 28 years old and was diagnosed with cystic fibrosis at 18 months old. Her parents are Hungarian and she is the only one in her family to have CF. She is a writer, a patient advocate, and a scientist. She holds a degree in biology from Virginia Commonwealth University and has worked in an environmental microbiology lab. 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.

Emma Boniface

Emma was diagnosed with cystic fibrosis at the tender age of two when prognosis was bleak and treatment options still limited. Growing up she spent lots of time in hospital but said her Mom insisted, Emma lived life to the fullest, coining the phrase “CF doesn’t have you, you have it”. 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.

Meagan Brackeen

Meagan Brackeen lives outside of Philadelphia, Pennsylvania with her husband, Rhett, and daughter, Margo. They are expecting their second baby girl in January 2021. Margo was diagnosed prenatally with cystic fibrosis after testing determined both parents are genetic carriers. Read more.

Nicole Driscoll

Nicole was diagnosed with Cystic Fibrosis at birth and has managed the disease ever since. Grateful for her mother's incredible care and positive attitude and her father's determination, she was raised like any other typical kid. Of course, this also included breathing treatments multiple times a day, plenty of pills and the occasional hospital tune up. Read more.

Kate Eveling

Kate Eveling was diagnosed with cystic fibrosis at the age of 2 after her weight declined because food wasn’t being absorbed properly and it would go straight through her! Her lucky parents had to deal with a lot of pooey nappies for two years before they found out why! Read more.

Chuck Fox

Dr. Chuck Fox is a 46 year old Cystic Fibrosis patient and a partner in a large private gastroenterology practice in downtown Atlanta. He was diagnosed with CF on the day he was born in 1973, after presenting with a bowel obstruction and having emergency surgery. Read more.

Chloe Gordon

Hey guys! I’m Chloe! I was diagnosed with Cystic Fibrosis at 6 months of age. My gene types are G551D, as well as delta F508. I’m 27, and live in PA. Read more.

Katelyn Harlow

Katelyn Harlow is a 34-year-old Texan native living with Cystic Fibrosis. She was diagnosed at 6 weeks of age and had a very healthy and active childhood and adolescence. She was involved in athletics from a very young age and was a competitive gymnast for ten years and was a long-distance runner for five years. 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.

Marieliz Landa

Marieliz was diagnosed with Cystic Fibrosis in her early twenties and has since dedicated herself to advocating for CF. She's been an active member of the CF Foundation, writing blogs, translating various CF educational materials for the CFF, actively a member of CFF community voice and also participating in various CF community programs and virtual events. Read more.

Andrew Loebach

Andrew Loebach lives in Peoria, IL with his spouse Cheriz Kunkel (who has CF). They are foster parents. He is the Meat Market Manager at the local Hy-Vee. Andrew volunteers for the local CF Foundation, being the Emcee for multiple events during the year. 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.

Misty Roussa

Misty Roussa’s oldest child, Jax, was diagnosed with Cystic Fibrosis soon after birth in 2008. Not knowing much about CF after Jax’s diagnosis, Misty immersed herself in CF research to arm herself and her family with as much knowledge as she could. Read more.

Nour Sahib

Nour is a pharmacist working in the field of specialty medicines and community pharmacy. She received her Bachelor of Science, English, and Pharmacy degrees from the University of Alberta in Edmonton, Alberta, Canada. She currently resides in Vancouver, British Columbia. 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.

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.

Holly Williams

Holly lives in Ohio with her husband and daughter Caroline. Holly's daughter was born in 2018 and was diagnosed with Cystic Fibrosis at two weeks old through the newborn screen. Holly and Ty found out they are carriers for the CF gene early on during their pregnancy with Caroline. 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.

Former 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.

Steven Greenough

Steven is an Advocate for the CF Foundation and for patients who fight the disease. He is a volunteer member of the RI Chapter Board of Directors, planning committee member for the RI CF Cycle for Life, CF Peer Mentor, and mentor for the Lung Transplant Foundation, and has become outspoken within the CF Community since receiving a double lung transplant in November of 2016. 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.

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.

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