Interested in sharing your story? We want to hear from you. Fill out the CF Community Blog Contributor form to get started.

CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

Search More Community Posts
Carolanne holding her baby, Bellamy, and smiling at the camera during a family photoshoot.


Learning to Meet the Nutritional Needs of My Baby With CF

My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.

Carolanne Cimino
| 11 min read
Anna Faith standing outside a hospital wearing a mask and holding her insulin pump.


How My Community Helped Me Cope With My Late Diagnosis

After managing various chronic symptoms my whole life, I was finally diagnosed with CF as an adult. As I struggled to cope with the news, my community rallied around me and taught me what true support looks like.

Anna Faith wearing a graduation cap and robe.
| 5 min read
Zachary holding his daughter Ruth at their annual volleyball tournament, Volley for the Cure CF


How I Navigated My Daughter’s CF Diagnosis

My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.

A professional headshot of Zachary Wilson
| 5 min read
Jessi's fiance smiling and holding their son, Oliver, who has CF


Navigating my Son’s First Year With CF

I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.

A selfie of Jessi Hutchens
| 7 min read
Lillian taking a selfie in a mirror while wearing her scrubs and PPT in the hospital


How I Balance My Career and Life With CF

Working in the medical field while having cystic fibrosis isn’t easy. But my occupational therapy career has helped me develop skills that make it easier for me to find a healthy balance between work and life with CF.

A selfie of Lillian Harrington
| 7 min read
Bianca and her son, smiling and holding giant gold balloons that read, "18."


Navigating Change as My Son Takes Charge of His CF Care

After being the primary caregiver to my son for so long, I was surprised by the many emotions that came with his transition to adulthood. But I’ve learned these complicated feelings are just an opportunity for us to grow closer.

A selfie of Bianca and her son
| 4 min read
Gabrielle laying in bed with her mom while using her nebulizer


Figure Skating Helped Me Cope With My CF Diagnosis

My life was turned upside down when I was diagnosed with cystic fibrosis caused by a rare mutation, but my passion for figure skating has helped me stay healthy and happy through it all.

Gabby wearing a purple Great Strides t-shirt
| 5 min read
Rachel Leah performing a one-arm dumbbell row in the gym


How I Learned to Be Proud of My Body With CF

As a personal trainer, I used to feel insecure about the physical effects of CF on my body. But over time, I’ve learned that my strength is defined by so much more than my appearance.

A selfie of Rachel Leah
| 6 min read
Shandra and her daughter holding hands and wearing black gowns outside


How I Fulfilled My Dream of Graduating

I was determined to finish school and set a good example for my children. Along the way, I learned how important it is to have a strong support system to help manage the challenges that can come with cystic fibrosis while I pursue my dreams.

A selfie of Shandra Arceneaux
| 5 min read
Jamie and his daughter, Desi, standing in front of the school bus


How I Manage My Daughter’s CF During the School Year

Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.

| 7 min read
Rena Barrow and her families, all wearing red t-shirts that read "Two Salty Okes" at their local Great Strides event


Creating Change for BIPOC People With CF

My children’s experiences being African American with cystic fibrosis motivated me to speak out and ignite change for families who are Black, Indigenous, and people of color (BIPOC) in the CF community.

A headshot of Rena Barrow
| 7 min read
Matison smiling in a hospital bed holding a plush toy in the shape of lungs


Voicing My Health Needs Before and After Transplant

I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.

A headshot of Matison Deaton smiling outside
| 7 min read