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Media & Press Coverage

The Bonnell Foundation has been featured in newspapers, TV, lifestyle publications and more

Meet Laura Bonnell

By CanvasRebel Magazine

Laura, thanks for taking the time to share your stories with us today Alright – so having the idea is one thing, but going from idea to execution is where countless people drop the ball. Can you talk to us about your journey from idea to execution?

When my daughter Molly was diagnosed with cystic fibrosis (3 months after she was born in 1994) I reached out to the CF Foundation for support, education and answers to common questions when raising a child with a deadly disease. In 1994 their answer was, “We are a fundraising entity, we can’t help you. Ask your doctor.” Their answer made me mad, annoyed and left me in disbelief.

Read the full story here

Guest column: Michigan lawmakers should consult with patients when trying to help patients

A consistent topic of today’s political debate is the cost of health care and how to lower these costs, including drug prices. The debate often focuses on patients with complex health needs, who also face higher bills for their care. What I continue to find puzzling is, despite the narrative of lowering prices to help patients, the patient community is rarely consulted or engaged with while these policies are being developed.

Read the whole story featured in the Oakland Press here

Senate Panel Reports Prescription Drug Board Package

Senate Democrats took their first step Wednesday toward the creation of its proposed Prescription Drug Affordability Board by reporting legislation from the Senate Finance, Insurance and Consumer Protection Committee.
All three bills (SB 483 Track, SB 484 Trackand SB 485 Track) were reported 5-2. Committee Democrats voted yes while Sen. Kevin Daley (R-Lum) and Sen. Lana Theis (R-Brighton) voted no. Sen. Mark Huizenga (R-Walker), the committee’s minority vice chair, abstained on all three bills, citing a possible conflict of interest.
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Cystic Fibrosis in Egypt: Advancing Care

By Samya Nasr, MD, Director, Cystic Fibrosis Center
It was always thought by the Egyptian Medical Society that CF does not exist in Egypt. One major problem has been the lack of the physicians’ awareness of the disease. Addressing that issue began in 1997, first through yearly lectures and workshops at different national and international conferences in Egypt and universities. I also began visiting children’s hospitals in Cairo and following CF patients there. In addition, I led a study on a high-risk patient at Cairo University, Children’s Hospital in collaboration with a team of Cairo University physicians and Stanford University geneticists.
Read the full article here

Payer Programs – All Sides Speak Up (Including our Laura Bonnell)

ViewPoints: Patients with cystic fibrosis not alone in grappling with payer copay adjustment programmes
by Jessica D’Amico
Like so many others among the 40,000 Americans living with cystic fibrosis (CF), Molly and Emily Bonnell were waiting for a cure. While the advent of Vertex Pharmaceuticals’ CF transmembrane conductance regulator (CFTR) modulators in 2012 represented a major breakthrough, Kalydeco (ivacaftor) and its successors — Orkambi (ivacaftor and lumacaftor) and Symdeko (tezacaftor/ivacaftor and ivacaftor), FDA approved in 2015 and 2018, respectively — offered relatively modest efficacy and were not applicable to as large a population as Trikafta (elexacaftor/tezacaftor/ivacaftor).
“When Trikafta came out, I literally was sobbing because I thought finally my girls are going to live,” Molly and Emily’s mother Laura Bonnell, founder and president of The Bonnell Foundation, said. “It meant everything.”

Read the full article here

WJR community interview with Vanessa Denha

It’s Your Community” | Sundays 6 to 6:30 a.m.

Each Week, WJR‘s “It’s Your Community” focuses on the names, faces, and happenings that are affecting our community. Join your host Vanessa Denha Garmo as she meets with community leaders, experts, and insiders to ask the questions that everyone is thinking. This week’s episode features Laura Bonnell.

Click here to listen

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