The Bonnell Foundation: Living with Cystic Fibrosis provides financial assistance, Educ. scholarships, & resources to navigate life with CF. #CFMomof2girls
Michigan
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Glad to be at the @RareDiseases Summit for some Breaking News.This morning I attended the Rare Disease Regulatory Roundtable, moderated by @ComstockRi54463 Assoc. Director of the FDA rare disease hub. Guest speaker #karimMikhail made an announcement about individual gene therapy. He is Director of CBER. Watch it here! Very exciting! @FDA @DCOfficial #science #innovation
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Rare moms meet up at @RareDiseases Summitt. @beckyquick @CNBC Thanks for all you’re doing to raise awareness! You were also a fabulous moderator. #inthistogether
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Today’s office! It’s loud with people (which I love), windows and hot coffee! #livingthelife #touslesjours coffee shop
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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.
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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.
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CF nutrition has changed dramatically since Trikafta. So what does nutrition look like today? Dietician Stacey Fogarty-Brown talks about what families need to know, how CF care is changing. #CysticFibrosis livingwithcysticfibrosis.sim…
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Friday the 13th was a lucky day for our new friend Chloe who shares her CF story today on the Living with cystic fibrosis podcast! laurabonnell.substack.com/p/…
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Rare disease. Meet Michael and Judi Goldberg. They share their rare story and it will inspire you. livingwithcysticfibrosis.sim…
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The Night shift: Living with CF after dark! livingwithcysticfibrosis.sim…
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It’s pregame! Set up day for tomorrow’s Gala! We have the best volunteers s and team! Can’t wait for the big fundraising day! @LauraTbonnell Headed to @MiLivonia to Laurel Manor for set up!
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Restricting health information doesn't protect patients – it leaves families with fewer answers. Don’t take away the tools that help caregivers like Laura Bonnell find the care their children need.
Read her story here @the535news: bit.ly/3T6WPv4 | @InformYourCare
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I don't know how to get through to @UHC . Trying to reach the right person by phone is not working. But @uhc has either been hacked, or some of your agents are consistently sending patients to my Foundation for help with diseases or illness we do not support. It's heartbreaking to talk with people who need help with other diseases, they're wasting their precious time calling a CF foundation. I am not sure why @uhc continues to refer people to us, but hopefully someone sees this and can send out an email to have its people stop sending random patients to us. We only help persons with cystic fibrosis. Thank you.
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Newborn screening didn’t exist when my daughter was born with cystic fibrosis – it was a PSA on the local news that made me call the doctor. For families facing a rare diagnosis, access to health information can change everything. Read more in @535News: bit.ly/3T6WPv4
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Laura shares thoughts about 16 years of the Bonnell Foundation and the upcoming Gala! livingwithcysticfibrosis.sim…
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