The Bonnell Foundation: Living with Cystic Fibrosis provides financial assistance, Educ. scholarships, & resources to navigate life with CF. #CFMomof2girls
Michigan
Joined September 2011
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The Bonnell Foundation retweeted
Hours in an infusion chair, or a few minutes for an injection. For patients, that difference is real. Thank you @RepMikeKennedy for asking @CMSGov to withdraw its fixed-dose combination proposal.
The Bonnell Foundation retweeted
Nearly 10,000 Michiganders started getting letters from Undue Medical Debt last week. If one lands in your mailbox, open it. It’s real, and it’s telling you about medical debt you or someone in your family has accrued that’s been erased. You don’t need to do a thing.
The Bonnell Foundation retweeted
Day two: NACFC.@CF_Foundation @RoadmapToCF
The Bonnell Foundation retweeted
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
The Bonnell Foundation retweeted
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 retweeted
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 retweeted
Are you ready to power more research together this year? 💪 When you log in to your account, you'll see which activities are ready for you to complete. These may be surveys, connecting health records, & more. Log in and & see what's waiting for you: allof-us.org/4sKU1Ra
The Bonnell Foundation retweeted
New podcast:Monday! Dr. Wendy Chung! #bostonchildrenshospital listen wherever you get your podcasts!
The Bonnell Foundation retweeted
Discriminatory value judgements lead to coverage delays and denials in Canada - migraine, rare disease, epilepsy - a glimpse at what to expect by importing their values. #MFNHurtsPatients #QALY #ValueOurHealth
The Bonnell Foundation retweeted
Listen this weekend to WWJ to hear my interview with Greg Bowman! We talk about the Harvest of Hope Gala September 20 th. But tickets today! @WWJ950 @RoadmapToCF Thanks WWJ! (The lemons have nothing to do with the interview, they’re just pretty).
The Bonnell Foundation retweeted
Harvest of Hope…join us! #TikTok tiktok.com/t/ZP8BqChdg/
The Bonnell Foundation retweeted
Instead of making Social Security benefits for people with #disabilities harder to get, we should be working to address its limitations. clients.tampabay.com/Videos/…
The Bonnell Foundation retweeted
Pictured here are some of the Rare Disease Advisory Council members: from left: Amber, Stephen, me, Dan and Katie! The rest of our council tours Thursday!
The Bonnell Foundation retweeted
It was great to tour the newborn screening lab in Lansing,MI. Their work is critical in diagnosing infants genetic or life threatening diseases. #MIDHHS Every baby born has bloodspots taken unless parents opt out. Early detection is key. Don’t opt out. @michbio . Pictured
The Bonnell Foundation retweeted
36 marathons. 36 days.
Cystic fibrosis.
One unstoppable woman.
@Sophgraceholmes shares her story on the Living with CF podcast. Watch on @YouTube or listen on @Spotify on Monday, August 4th.
Host: @LauraTbonnell
#CysticFibrosis #MarathonRunner #ChronicIllnessWarrior
The Bonnell Foundation retweeted
A new analysis by the Office of Health Economics – the world’s oldest independent health economics research organization – sheds light on how the discriminatory #QALY metric is used to limit access. #ValueOurHealth #MFNHurtsPatients
The Bonnell Foundation retweeted
Last week, I brought families from the @PatientsRising fly-in to meet @SpeakerJohnson. Vickie along with Rocco and his family shared Medicaid struggles: 1M on waitlists, no specialists. Despite $98B in waste, it’s failing many. Grateful for his listen—reform must prioritize our most vulnerable patients.
The Bonnell Foundation retweeted
Did you miss our recent webinar with @cfunited2023 and @RoadmapToCF? Don’t worry! The slides are now available to download - bit.ly/3xuOG52. Learn about state policies like PDABs which have unintended consequences on rare disease treatments. #RareDisease #RareandReady #PDAB
The Bonnell Foundation retweeted
Meet Marwan who lives in Egypt and has cystic fibrosis! #TikTok tiktok.com/t/ZP8M14nXg/
The Bonnell Foundation retweeted
It is a step backward for the U.S. to import the same measures used to devalue disabled lives in other countries. I said it then and will say it over and over again. #IPIHurtsPatients #Disability
"It is profoundly upsetting they are now trying to import these countries’ policy decisions, which will no doubt end as badly for people with disabilities and serious conditions in the United States as they have for those overseas.” @hontonycoelho mercurynews.com/2019/01/02/o…
