48th Emmy Awards! We don’t win for our Emmy, but we sure raised awareness about cystic fibrosis! gallery.rsvpbooth.com/photo/…

Lovely Lisbon morning! #TikTok tiktok.com/t/ZP8srG6Y3/

Connections. Connections. Connections. The #ECFS2026 is a wonderful conference full of brainstorming, hugs, learning and sharing! “Knowledge is wasted if it’s not shared.” Chris Hardwick @LauraTbonnell

“Knowledge and information is wasted when it’s not shared.” Chris Hardwick #ECFS2026

At the @ECFSConference @ecfs and having the best time. Already in a half day it has been so worth it! I have already met extraordinary people. Just a snapshot of some of them! Advocacy and scientists: it’s the best mix!

Honored to be featured in @IAmBiotech news! bio.news/latest-news/cystic-…

It’s unfortunate that @DrOz doesn’t understand the problem with MFN. Also, TrumpRx is just a platform to visit. It sends visitors to companies pages. It’s not offering anything more than that. Please consider hosting a rare disease event so we can explain our concerns for the rare population.

Hear the story of CF Mom Beth Vanstone. An advocate in Canada. livingwithcysticfibrosis.sim…

Happy Mother’s Day!!!! instagram.com/p/DYKL3d8EREY/…

'Fighting for life' to 'creating new life': Cystic Fibrosis advocate helps others with disease. Our Friend Pete Proimos shares his CF story on @MeetThePress nbcnews.com/video/-fighting-… via @nbcnews

CA AB 1887 is designed to eliminate prior authorization and step therapy requirements for FDA-approved rare disease therapies. Big thank you to @RickChavezZbur and all the advocates that testified at the Health Committee Meeting.

A beautiful podcast with our dear friend, Margarete Cassillina. She has two kids with CF, a daughter in heaven and son who has given her grandkids! A touching story of love and moving forward. livingwithcysticfibrosis.sim…

It's CF Awareness Month! Let's Raise Awareness. This podcast is a good place to start: A Look Back, a Turning Point for the CF Community, with our hero Dr. Francis Collins. Just over a week after Trikafta was approved by the U.S. Food and Drug Administration, five months ahead of schedule, more than 5,000 members of the CF community gathered in Nashville for the North American CF Conference. Laura Bonnell, founder of The Bonnell Foundation, and a mom to two daughters with CF, says it was an unforgettable moment of hope and progress. Laura had the incredible opportunity to interview Francis Collins of the National Institutes of Health, a conversation that underscored just how far the CF community has come, and the promise of what lies ahead for Vertex Pharmaceuticals Listen here: livingwithcysticfibrosis.sim…

CF Awareness Month has begun! Day 1: Raise Awareness. Embracing Egypt: youtu.be/SlMscQ6Spjg

Education Day 2026: A Beautiful Day! youtu.be/vt0_KzEuDyY?si=8Q5C… via @YouTube

Our documentary is out! It's a short one, watch it here. Embracing Egypt: youtu.be/SlMscQ6Spjg @NasrSamya @RobinSchwartzPR

You watched the trailer, and waited. It publicly debutes today. Watch our short documentary, Embracing Egypt! Thank you to Dr. @NasrSamya for raising our awareness about health inequity and to @RobinSchwartzPR for putting our video and photos from Egypt (our story) together. It's a beautiful documentary to raise awareness. youtu.be/SlMscQ6Spjg . .

Big news in cystic fibrosis research - Sionna Therapeutics has completed enrollment in a clinical trial testing a new drug (SION-719) added to Trikafta. This new approach aims to stabilize the CFTR protein at its core, potentially helping treatments work even better for people with CF, especially those with the most common mutation. Results are expected in summer 2026. Why it matters: This could be a step closer to fixing the underlying problem in CF, not just treating symptoms. Lots of new hope! @sionna_tx @NasrSamya @LauraTbonnell #science #innovation #bio @michbio

I bought this stationary after a 2 day advocacy trip to DC! Each one is different. Love all the history. @DCOfficial @washingtondc