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CF Patients Improve Lung Function with Elexacaftor Combo, Data Show

Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator

Replies: 0

Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.
What do you think of this news?

Social Distancing Date Night: Sickness in the Movies

Mar 16, 2020 07:39 am | Bailey Vincent

Replies: 0
As some of you might have seen already, the movie Contagion is suddenly trending on digital streaming services, despite being over 9 years old. A great many of us are studying up on pandemic-cinema, and there are so many sick movies to choose from that stretch far beyond the zombie-virus themed subtext.
This got me thinking: What do you feel is the best portrayal of sickness or CF in the movies to date?
Is it the most notable of them all in the CF world, Five Feet Apart? Or the lesser known like Jack and Jill vs. the World or Foreverland?
Is it the star-crossed teen tragedies of The Fault in Our Stars, A Walk To Remember, Now Is Good, Me Earl and the Dying Girl, Here On Earth, or Kiss and Cry?
Is it the cancer classics of Sweet November, Dying Young, Love Story, Stepmom, or the more recent Irreplaceable You?
Is it the cheesy weepies like Autumn in New York, Me Before You, Breathe, Midnight Sun, or Griffin & Phoenix?
Is it the ones that make you both laugh and cry, like 50/50 (one of my personal favs), Love & Other Drugs, or The Big Sick?
Is it the lesser known films like You’re Not You, The Diving Bell and the Butterfly, Seven Pounds (not lesser known but maybe lesser appreciated), Life as a House, A Monster Calls, or Restless?
Life as a House is one of all time favorite movies made, regardless of sick subplot. But in terms of accurate representation, it would of course probably be Five Feet Apart for me because… well, we got G-Tubes on the big screen, and that was pretty cool.
What about you?

Pediatric Rare Disease Therapies on Rise, But Most Repurposed, Study Finds

Mar 13, 2020 05:11 am | Cystic Fibrosis News Moderator

Replies: 0

The number of pediatric rare disease therapies has grown over the past decade, but most are repurposed old treatments, a study found. Read more here.
What did you think of this article?

Beam — my new favorite exercise platform

Mar 12, 2020 09:15 am | Jenny Livingston

Replies: 0

The benefits of exercise are pretty well-understood in our community, but that doesn’t mean it’s always easy to maintain a workout routine. I’ve talked before about how I tend to fall off the exercise wagon every now and then and sometimes I really struggle to get back on.
But I’ve found something that has not only helped me ease back into exercise, it’s been so much fun! BEAM! Beam is an online exercise platform with on-demand and live classes specially tailored to the CF community. Many of the sessions are even taught by instructors with cystic fibrosis.
I’ve loved having the ability to jump on choose a class that fits my energy level and whatever time constraints I may have that day. And there’s something doubly awesome about knowing that the instructors and entire Beam team are so knowledgeable about CF.
And right now, due to the concerns about COVID-19, Beam is offering a two-month free trial! If you normally workout at a gym and are concerned about the risks of coronavirus, or if you’re simply interested in giving Beam a try, now is the perfect time!
Follow Beam on Instagram or check out their website.
Use code BEAM-STAY-WELL for 2 month free trial!
What is your favorite exercise platform? How do you stay active during cold and flu season? Has COVID-19 affected your workout routine in any way? For instance, if you usually workout in a gym, are you choosing to stay home now?