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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?

My List of Book/Movie/Spotify Recommendations for Lockdown

Apr 01, 2020 02:00 am | Kevin Schaefer

Replies: 0
Hey everyone! Hope you’re all staying safe and healthy out there.
So with everything going on in the world, I thought I’d do a lighter post about entertainment recommendations for quarantine. I’m a huge pop-culture guru, so I’m handling quarantine ok. This is just my personal list of book, movie, and Spotify recommendations. I’m leaving out TV, since there are just too many shows out there.
1) If at Birth You Don’t Succeed by Zach Anner: Zach Anner’s 2016 memoir If at Birth You Don’t Succeed:My Adventures with Disaster and Destiny is hilarious, touching, and relentlessly witty. Anner shares his experiences as a comedian who has cerebral palsy, as well as numerous stories and idiosyncrasies from his childhood. This book is great for people with disabilities, but it’s also just a great read for anyone.
2) Stardust by Neil Gaiman: I’m a big Neil Gaiman fan, and Stardust is one of my favorite books of his. It contains star-crossed lovers, witches, and swordsmen competing for their late father’s throne. It’s a familiar and subversive take on the fantasy genre, and it’s available in several formats. There’s the standard prose version, and the original graphic novel which Gaiman co-created with artist Charles Vess. I also love the 2007 film adaption with Charlie Cox and Claire Danes.
3) Fighting with My Family (2019): Florence Pugh stars in this dramedy biopic about WWE champion Paige, and her wrestling family from England. So yes, it’s a British wrestling comedy, and the film is as unique as its premise. Writer/director Stephen Merchant injects plenty of humor and heart into this story, and he knows exactly how to balance the two. Co-stars include Vince Vaughn as the no-nonsense WWE coach, and Nick Frost and Lena Headey (Game of Thrones) as Paige’s eccentric parents. Plus, Dwayne Johnson plays himself in two brilliant cameos. Stream this movie on Amazon Prime or Hulu.
4) Booksmart (2019): Olivia Wilde made her directorial debut with this teenage comedy. Taking cues from Superbad and John Hughes classics, the film flips the script on the genre by focusing on two overachieving students on their last day of high school. Realizing that they’ve unnecessarily spent all their time studying and doing extracurricular activities, they decide to cram all of their partying into a single night. The result is a hilarious and touching coming-of-age story. Stream this movie on Hulu.
5) Tides of a Teardrop (Album) by Mandolin Orange: I mostly listen to rock, but I do love folk music. Mandolin Orange is a North Carolina indie folk band, and their 2019 album Tides of a Teardrop is one of my favorites. It’s simple, melancholic, and soothing to listen to. My favorite track is called “The Wolves.”
6) Office Ladies (Podcast): Any fans of The Office here? You’re in luck! Jenna Fischer and Angela Kinsey (who played Pam and Angela on the show) now host a podcast called Office Ladies. Each week, they revisit and discuss an episode of The Office, and share tons of behind-the-scenes anecdotes with listeners. It’s a delightful and funny podcast, offering perfect escapism for people right now.
I hope this list helps! What are your recommendations?

How do you stay connected?

Mar 31, 2020 09:29 am | Jenny Livingston

Replies: 1

During this time, many of us (hopefully all of us, actually) are practicing social distancing and self-isolation. The CF community is high-risk, which means that we need to be taking extra precautions. Fortunately, we’ve been practicing for this our entire lives — we’re pros at infection control!
What I’m curious about right now is how you’re staying connected to the world when physical closeness isn’t possible. I’ve seen things like virtual-book clubs, virtual happy hour, informational groups for those of us who are suddenly homeschooling parents, and more.
What is your favorite way to stay connected right now? Additionally, what are some cool virtual gathering ideas you’d like to see or participate in?