Thanks Kevin, good to hear from you and Jenny. I will post about my experiences with Trikafta soon

Cheers

Paul

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!

Hi Jenny,

Are you still on the forum? I apologize for not having responded for such a long time, much has happend and I went through a nightmare of mental side effects from trikafta. I post on the forum soon to tell about it. Hope you are doing well. Debbie and I are holding on to eachother to overcome the situation, and recently with some…

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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

We want to hear about the best things to happen to YOU this past month!

For me, this month marks my fifth year of marriage to my lovely wife.

What was a monthly win for you? How would you like to build off that going into March?

In a recent guest column, writer Daelyn James talked about how they prefer to keep CF private because of the judgment that follows sometimes when people know.

We’ve all been there: evaluating a social situation and knowing it’s better to keep CF private than talk about it.

Do you prefer to keep your battle with CF private? Why or why not?

A few months ago, I went to a local radiology center to get a bone density test done at the recommendation of my doctor. My results stated that I have osteopenia.

Bone density tests are not just the best measure for how your bones are developing as we get older, but are also important in dealing with CF-related diabetes. People with… Read more

Once a childhood disease, most people with CF today are adults! Because most of us are adults, we’re all looking for help with getting older, especially from older people with CF.

I’ve definitely sought advice from people older than me with CF, and the most recommended form of advice given to me is to understand the importance of… Read more

In a tradition we’re looking to bring back, we want to hear about the best things to happen to YOU this past month!

For me, this month marked the one year anniversary of my taking Alyftrek! The medicine has radically changed my life and given me a new hope and a new opportunity.

What was a monthly win for you? How would you like to build… Read more

The importance of clinical research and testing cannot be understated for the CF community. In his new column, Tre LaRosa wrote about his experience partaking in a clinical trial that ultimately did not lead to a new medicine.

However, LaRosa feels that the clinical trial was important.

Have you partaken in a clinical trial for CF? If… Read more

Partnerships in CF are the best way to tackle CF!

What would you say has been the most beneficial food item in this protein-rich diet?

That’s awesome! Hopefully, you can travel to a new location this summer that’s been on your bucket list.

What’s your favorite beach that you’ve ever been to?

Yes! Hopefully, some of the drugs in the pipeline that are undergoing testing will be approved. Therefore, more people will have more opportunities to live a full life with CF modulators.

I’m not sure about Trikafta, but Alyftrek has helped improve my liver numbers a bit! I’ve mostly purged a lot of mucus every few days. Keep in mind, though, everyone is different!

Awesome! Hope some great tunes are coming your way!

Hi everyone,

My dr. talked to me about Alyftrek maybe to try it in near future. I’m on Trikafta and i have lots of inflammation in my lungs and body. I would like to know if someone had similar situation of me and how did it go with Alyfrek?

Any good web site on explain the difference between both drugs and how do they work?

Thx

As a CF spouse, advocating for my CF partner with their CF care team means being a unified duo, asking for clarification if and when needed, doing research, staying up-to-date on major news and announcements, and ensuring that his medical needs are heard. This takes some preparation – we always come ready to doctor’s visits with our “list…

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As it pertains to my spouse with CF, we have found that protein-rich food items help to maintain and/ or gain weight – shakes, supplements, bars. It can be tricky to find items that are glucose-friendly (for his CFRD), but after some research and discussion with his CF care team, we have found some of these food items that help do the trick,…

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This past summer, I was able to travel to a new place with my spouse. It was a bucket list destination, and we ended up having a great time. I find it important in my own life to use the small windows of opportunity that I have to focus on spending time with the ones I love and also using this time to see and explore new things and places. …

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Particularly, I enjoy being by the water and on the beach. I love to see water in any way, shape, or form – the ocean, a lake, or even a harbor or bay. Water is very calming to me and allows me moments to feel a bit of stress relief and escape from my everyday life.

In 2025, I listened to my usual rotation of music and artists. This new year, I am hoping to add in some new music to my regular lineup – especially music that can help me decompress, wind down, and alleviate my stress (especially while driving)!

I am looking forward to continued heath for my loved ones, especially those dealing with diagnoses like CF. Upon some further reflection today, I am truly astonished by the amount of progress that has been made over time with CF treatments – even within the last year or two years alone. Who knows what this new year may have in store? I am…

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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

I am very curious about Alyftrek. I am on month 4 of Trikafta and it has helped lung function and energy levels tremendously. But, there are some side effects. What side effects have you experienced get better/worse on Alyftrek? Has it helped liver functions for anyone (over Trikafta)?

Every body’s body reacts different and I’m glad Trikafta works for you!

It’s definitely the medication. I know I had some of those symptoms initially after starting it. They’ll eventually phase out and you’ll be okay.

Thanks, Lin! If you’re in the US try reaching out to your state college’s hospital. They generally have CF departments.

With Christmas just a few days away, and many other holidays at this time, it can be a busy time of the year. It can be especially challenging to balance our health with holiday festivities, traveling, etc.

What are your plans for the holidays? If you are a CF patient or caregiver, do you have any tips for managing your health needs during… Read more

My twins were recently diagnosed with cystic fibrosis, and their 2-month checkup is coming up with vaccines. From your experience, which vaccines are most important or specifically beneficial for babies with CF?

We’re hoping to do the minimum necessary related to their condition. They aren’t in daycare—only occasional family visits and… Read more

We’re just weeks away from a new year! In 2025, we saw the introduction of Alyftrek and saw more trials of CFTRs developed for folks who have 10% of nonsense genes.

What are you looking forward to in 2026? Are there any trials you’re following for yourself or loved ones?

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