Hello, CF community!

I enjoyed this column by Anna Jeter. This is from Pulmonary Hypertension News, one of our sibling sites. Anna writes about many of the frustrations she’s had with medical dramas in the past, and how they are often woefully inaccurate. As a patient with pulmonary hypertension, she stopped watching these shows for a long… Read more

Columnist Tré LaRosa recently wrote about advocacy and cystic fibrosis. He went with his parents to Capitol Hill to meet with representatives and advocate for the CF community. Check out his column here!

I really like how this piece emphasizes that advocacy takes many different forms. I especially like this passage: “To me, advocacy is… Read more

Hey Paul! It’s great to hear from you! Jenny stepped down as a moderator a while back, but we still keep in touch. She’s doing really well. I let her know that you posted, and she was really glad to hear from you. @William is the moderator of this forum now, and he would be happy to answer any questions. Glad to have you back!

Hello, CF community!

Rare Disease Day took place at the end of February. This is a nationally recognized event to raise awareness for a wide range of rare disease communities.

Bionews, the parent company of this website, put together a page and a series of videos. Contributors for this are from different communities, and they discussed… Read more

Happy New Year, everyone! Hope you are all having a great start to 2026. We also understand that this can be a difficult time for many, and we hope that you can find support within this community.

With the new year, many set personal goals for themselves. These can be related to work, relationships, or fitness and health. For those living… Read more

Hello, CF community! Hope everyone is enjoying the holiday season.

Here’s a video we recently published with CF columnist Jen Cogliano. Jen reflects on being a mother with CF. She shares stories about raising her daughter while managing her health and shares advice for other parents with CF.

Do you have any takeaways from this video? If… Read more

Hello, CF community! Wishing everyone a happy holiday season.

We recently published this video with Jen Chamberlain about preparing for the holidays with CF. Jen’s daughter has cystic fibrosis, and she talks about the extra steps she takes to keep her daughter and the rest of her family safe during the holidays. Particularly at this time… Read more

Great recommendations! Thanks for sharing.

Thanks for sharing your story! Welcome, Lin!

Managing CF symptoms can require creativity, resiliency, and patience. Over time, many people develop strategies that help them cope. These coping mechanisms can help with the mental, emotional, and physical effects of living with CF.

What coping strategies or habits help you manage your symptoms most effectively?

Thanks for sharing!

Hello, CF community!

People living with CF often think about how this disease impacts family members and caregivers. For the caregivers here, I am sure you’ve had to do a lot of learning and adapting throughout your CF journey.

What resources may have helped you? Did any doctors or specialists do anything to help you as a caregiver? What… Read more

Hello, CF community!

For many people living with CF, the vest airway clearance system is a common device for treatments. Even when people aren’t sick, this can be a great tool for managing respiratory issues.

How often do you use your vest? Do you increase the frequency when you are sick?

Hello, CF community!

Check out Tré’s latest column about managing CF-related diabetes. He writes about receiving the diagnosis and how it’s affected his lifestyle. Dealing with another diagnosis on top of cystic fibrosis is never easy.

Do you live with CF-related diabetes? How do you manage living with this disease, both physically and mentally? 

Hello, CF community! Hope everyone is having a great summer.

Check out this video we recently posted. Our returning columnist, Tré LaRosa, shares his thoughts on advocacy and cultivating change for the CF community. He discusses his experiences with advocacy in medical settings, as well as at the legislative level. He also shares advice… Read more

Hello, CF community! Hope everyone had a great weekend.

Please check out the video below. This is part of a new series of community videos, and this one is focused on couples in the CF community. In this video, our very own Brad Tatsuno-Dell and his wife, Maile, share the story of how they met and began their relationship. They also discuss… Read more

Hey everyone!

Let’s talk about when you were diagnosed with CF.

Do you think your age had anything to do with how quickly you were or were not diagnosed? Do you believe that you were taken seriously on your journey to diagnosis?

Hello, CF community!

We’re excited to hear about your plans for December. Please let us know if you have any upcoming appointments or procedures where we can provide support. We’d love to send you positive thoughts and energy and celebrate even the tiny victories.

What’s on your medical calendar for December?

Happy holidays, everyone!

Do you have any plans for the holidays? Does CF present any challenges or unique circumstances around the holiday season?  

We’re excited to hear about your plans for October. Please let us know if you have any upcoming appointments or procedures where we can provide support. We’d love to send you positive thoughts and energy and celebrate even the tiny victories.

What’s on your medical calendar for October?

Let’s talk about mental health and cystic fibrosis.

How is your mental health these days? Do you have any strategies for addressing and improving your mental health?

Hey everyone!

Check out Jennifer Chamberlain’s latest column about a recent camping trip she took with her family. Throughout the trip, she remained cognizant of the pros and cons for her daughter with CF.

Do you enjoy camping and the outdoors? What challenges does CF present in these scenarios? 

Hey everyone!

Check out Lara’s latest column here. Lara examines the link between medical trauma and PTSD, and how CFers experience PTSD.

Have you experienced PTSD from medical trauma? Have you sought out counseling or other mental health resources for support? 

In Jennifer Chamberlain’s latest column, she writes about her daughter with CF receiving an asthma diagnosis. Read the column here.

Have you or a loved one dealt with multiple diagnoses? How do you manage from a mental and emotional standpoint?  

Great list, Tim! Happy 2024!

Hey everyone!

We’re excited to share that starting Wednesday, September 20th, the forums will have a new look! We greatly anticipate that the upgraded design will make posting and navigation much easier. All posts and discussions will remain, and no changes to log-in info will be necessary. We expect the transition to occur at 8 a.m. Central… Read more

Brad’s latest column speaks to this conversation. Check it out here.

Read Jennifer Chamberlain’s latest column here.

Jennifer writes about learning about her daughter’s diagnosis when she was pregnant. She expresses the hardships of learning about CF, as well as how she and her husband adapted to it. She then provides a message of hope for other parents in the community.

Here’s an excerpt, “Being Claire’s… Read more