Activity

Yesterday I got a screenshot of the FDA’s approval for what is now Trikafta: I’ve been on the study for the last 10 months — and hearing an actual name (aside from triple combo) is bonkers to me. What’s even more bonkers is how I feel: how my numbers have changed, and the ability to wake up and breathe without a slew of mucus const…[Read more]

Hi my name is David and I am working on getting a law federally passed called Davids law this law will allow all students with CF
To self administer there own enzymes during the school day and during after school activity s the student would have a bottle of enzymes for the school day and one for after school activity s as well the 2 Nd bottle…[Read more]

As I’m sure many of you know, the FDA has approved Trikafta, the long awaited “triple combination” drug from Vertex. This drug will be effective for 90% of the CF population. This is a huge win for the CF community! We have every reason to be thrilled and full of hope!

But as we celebrate together, I think it’s also important to remember…[Read more]

I started practicing yoga about 6 years ago and I’ve found it to be a helpful tool in managing my CF, both physically and mentally.  One of the best things about yoga (in my opinion) is that it is easily accessible to just about anyone. The poses (asanas) can be modified to fit a person’s level of skill and physical capability. The breath…[Read more]

Ella Balasa, a columnist at CF News Today, was recently granted early access to the “triple combo” — the latest CFTR modulator therapy from Vertex, which is currently being evaluated by the FDA.

Here’s what Ella has to say about it:

“I started the triple combo on September 23rd at 25% lung function. I have been followed at Duke for…[Read more]

Tré LaRosa examines the misguided claims around vaccine safety as he urges people to get the flu vaccine this winter. Click here to read more from Tré.

Do you usually get a flu vaccine? If so, how has that been working to you? And if not, why don’t you get a flu shot?

Scientists have discovered a new way to treat cystic fibrosis that involves delivering artificial proteins to replace the faulty CFTR protein. Read more about it here.

What do you think of this news? Were you aware of this new way to treat CF?

CF is undoubtedly a numbers game – weight, lung function, blood sugar, etc. It seems like we’re constantly being bombarded with information in the form of numbers! One of the most important numbers is associated with pulmonary function testing (PFTs). Some people like to share their numbers publicly, while others choose to keep them…[Read more]

If someone were to ask about the worst part of living with chronic illness, they’d likely expect to hear about physical symptoms. But for me, the mental and emotional aspects of CF can be the most difficult to cope with. ⁣⁣
⁣⁣
One thing that keeps sneaking into my life and whispering hurtful lies is something I’m sure many of you are familiar wi…[Read more]