The Bonnell Foundation

The Bonnell Foundation: Living with Cystic Fibrosis provides financial assistance, Educ. scholarships, & resources to navigate life with CF. #CFMomof2girls

[The Bonnell Foundation @RoadmapToCF]

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

[The Bonnell Foundation @RoadmapToCF]

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!

[The Bonnell Foundation @RoadmapToCF]

Honored to be featured in @IAmBiotech news! https://t.co/B0wyLQjxQt

[The Bonnell Foundation @RoadmapToCF]

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.

[The Bonnell Foundation @RoadmapToCF]

Hear the story of CF Mom Beth Vanstone. An advocate in Canada. https://t.co/zjixl3Pyaw

[The Bonnell Foundation @RoadmapToCF]

Happy Mother’s Day!!!! https://t.co/MGmHwQt44T

[The Bonnell Foundation @RoadmapToCF]

'Fighting for life' to 'creating new life': Cystic Fibrosis advocate helps others with disease. Our Friend Pete Proimos shares his CF story on @MeetThePress https://t.co/rQ0caYr7Fs via @nbcnews

[Rare & Ready Coalition @rare_ready]

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.

[The Bonnell Foundation @RoadmapToCF]

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. https://t.co/toFRXembKf

[The Bonnell Foundation @RoadmapToCF]

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: https://t.co/9YJGRUYbsk

[The Bonnell Foundation @RoadmapToCF]

CF Awareness Month has begun! Day 1: Raise Awareness. Embracing Egypt: https://t.co/XyA0gehHpq

[The Bonnell Foundation @RoadmapToCF]

Education Day 2026: A Beautiful Day! https://t.co/sMYLdoaW5b via @YouTube

[The Bonnell Foundation @RoadmapToCF]

Our documentary is out! It's a short one, watch it here. Embracing Egypt: https://t.co/XyA0gehHpq @NasrSamya @RobinSchwartzPR

[The Bonnell Foundation @RoadmapToCF]

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.

https://t.co/c4ghI5UalK . .

[The Bonnell Foundation @RoadmapToCF]

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

[The Bonnell Foundation @RoadmapToCF]

https://t.co/zBwNQwrvt9

[Laura Teicher Bonnell she/her @LauraTbonnell]

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

[The Bonnell Foundation @RoadmapToCF]

Everyone at the Bonnell Foundation is grateful and thrilled to see that Senator Chang is addressing the copay accumulator issue with SB 914. This current copay accumulator adjustment program run by insurance companies does not benefit patients. @stephanielily is working to correct this issue! TY! @LetsRockCF

[ACS CAN Michigan @ACSCANMichigan]

Sen. @stephanielily introduced legislation that would address insurance companies' copay accumulator adjustment programs & ensure Michiganders receive the total value of prescription drug assistance to afford their treatments, improving access to care. https://t.co/HfMvX6gCQT

[The Bonnell Foundation @RoadmapToCF]

If you want to make money and get involved in CF research, this might be for you. Please note that The Bonnell Foundation is not responsible for this survey. We were asked to post it and love community involvement. Caregivers if you have a loved on with Cystic Fibrosis and they are currently taking CFTR modulator therapy @PillarAdvocates is seeking your help. If that person with CF is under 18 years old and you're wiling to participate in a 60-minute phone/web interview. Participants are paid $200 in appreciation of your input and time. If interested, please complete our brief registration to be contacted at https://t.co/uzEi6VqOsi or email Christine at [email protected]. Be sure to include your phone number and time zone so a Patient Liaison can reach out to you. We will go through a few screening questions prior to scheduling the actual interview. This study is for US Residents only.

[The Bonnell Foundation @RoadmapToCF]

Agree.

[Partnership to Improve Patient Care (PIPC) @PIPCpatients]

Policies barring #QALYs have rare bipartisan support. Former Reps. Larry Bucshon & Michael Burgess discuss how #MFNHurtsPatients & undermines U.S. laws barring QALYs in an opinion for @dcexaminer.