My number is 3 @ICER_review my daughters are worthy of a longer life thx to new drugs. Emily’s boyfriend agrees. Your QALY system of measurement of a life is flawed. Your giving insurance companies bad info. #numbersthatmatter @engagecf
Happy Valentine's Day from the Cystic Fibrosis Foundation! We couldn't resist this sweet Valentine from Great Strides Ambassador Zuri. We hope your day is full of love! 💜❤️
Don't miss Tuesday morning's with Taylor Lewis and his Strength and Conditioning class. Tuesdays 8 AM EST / 5 AM PST 🇺🇸/ 1 PM GMT 🇬🇧 https://t.co/6STKt0dhup
We look forward to seeing you then!
#cysticfibrosis#beamfeelgood
EMA has confirmed to us that it decided in Oct that @VertexPharma triple therapy for #cysticfibrosis (#Trikafta in US) will be reviewed under accelerated assessment. It will be fast-tracked to reach a decision sooner, typically in 7/8 mths, instead of the usual 1 year.
Don't forget to register your team to join us at South Florida #GreatStrides in 2020! We stride for fierce fighters like Zuri - until it's done.
Start or join a team: https://t.co/XfUf9dcCSd
Trying to keep active with lower lung function? We produced classes in collaboration with @BreasMedical to show you how to use NIV during continuous cardio / interval sessions.
Find out more on the Beam blog:
https://t.co/SJmcyz83fC
#CF#Cfwarrior#CysticFibrosis#Cardio
Mornin all,
Help -
My stomach is SO bruised and rock hard in places from constant insulin.
Is there anywhere else I can do it?
Someone said on yr bum, but that’s not that practical in public 😂
#cysticfibrosis#diabetic@cftrust
Happy #FinestFriday! We are honored to introduce another of our Southern Tier Finest Honorees, Lindsay Meehan! To support Lindsay and all of our honoree’s visit the Finest website (https://t.co/52V490XW4b) to purchase tickets and make a donation!
Working together, we can achieve so much more! Thank you to everyone who has walked for a cure at Great Strides this year, including our national sponsors AbbVie, Genentech, Gilead, and Vertex.
We are proud to recognize the Cacciotti Family as donor of the week! The inaugural EV Fest raised over $33,000 for the Labatt Family Heart Centre. 💙Thank you Kristofer, Lesley & EV Fest team for your hard work & ongoing fundraising efforts for SickKids. https://t.co/bNJ1jB0Vjb
"My number one piece of advice for parents of kids with #cysticfibrosis? Entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road." https://t.co/bSsdBxN7S4
Getting a lung transplant is a physically and emotionally difficult journey. Whether you're going through the evaluation process or on the list, understand the importance of social support through every step of the way. https://t.co/qFPsyJUvkk
How would accelerating a cure for #cysticfibrosis affect you or your loved one? Submit a drawing for a chance to have it featured on @AlexBowman88’s helmet! Thanks @CARSTAR and @AxaltaRacing for hosting the #AcceleratetheCure contest. For full detail: https://t.co/ZVqA4X1jz2
Our air bnb has no wifi AND NO AC. I am in Greece and am not great at breathing (44% lung function with cystic fibrosis)! Super cool @Airbnb allows their hosts to change their listings WITHOUT repercussion.