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Media & Press Coverage

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

Live • Breathe • Inspire Podcast – Dr. Collins and Emily’s Entourage

This is a podcast with Dr. Francis Collins, Director of the National Institute of Health (NIH). He discovered the gene that causes cystic fibrosis in 1989 at the the University of Michigan in cooperation with a handful of other scientists. Dr. Collins recently received the Warren Alpert Foundation prize. The second part of this podcast is with Emily,

Co-found of Emily’s Entourage. She is 33 years old and has cystic fibrosis. With the help of her friend she got 5 broadway actors/singers to make a video about CF.

Hear their story:

Press Release: Bonnell Foundation to Host Cystic Fibrosis Public Policy & Advocacy Summit

Raising awareness about the importance of access to care for CF patients & their families

Jan. 9, 2017 (Southfield, MI) – The Bonnell Foundation today announced an important upcoming collaborative summit to spotlight cystic fibrosis (CF) and raise awareness about the disease and the public policy needs of the CF community in Michigan. The summit, “A Roadmap for CF,” will feature the newly formed statewide Cystic Fibrosis Task Force and presentations by key legislative representatives, advocacy experts and CF patients and their families. It will be held from on Saturday, Jan. 28, 2017, from 10:00 am – 1:00 pm, 26455 American Drive, Southfield, MI.

The summit is intended to bring together leading experts on CF, medical professionals, public policy makers, parents, patients, and caregivers to tackle public policy issues surrounding CF in Michigan and present a training to help the
CF community better engage with state lawmakers and key decision makers on the challenges of living with CF and what resources and tools are needed to navigate the disease.

For more information about the summit, visit www.thebonnellfoundation.org or email Laura Bonnell, president of the Bonnell Foundation, at thebonnellfoundation@gmail.com.

Some 30 Managed Medicaid Patients Not Able to Get on Orkambi Drug

KristinaCaudillThis is 29 year old Kristina Caudill. She has cystic fibrosis. I (Laura Bonnell) met with her Monday to talk about how many times her managed medicaid plan denied her request to get on Orkambi, an approved drug for CF by the FDA (July). Caudill and her CF doctor will try for a 5th time to get her on the medication. The state medicaid panel met Tuesday and after months of people advocating to get the drug approved, the panel made a recommendation to have it listed as an acceptable drug. The state Director, Chris Priest (approachable, media accessible and with a desire to help) says it won’t be a long wait but couldn’t say exactly when it will be in the hands of the approximately 30 people who don’t have access to the meds. These are people on average whose yearly income is below $30,000. I also talked to Governor Snyder today and he said the new drugs coming out for people with CF and other diseases is exciting. As Priest stated, and the Governor agreed, they have to listen to the recommendation of the panel (and they approved it), pay attention to costs and talk with legislators.

Listen to the audio of Laura and Kristina’s talk:

Bonnell Foundation December 2012 PSA

The Bonnell Foundation’s “Portraits of Cystic Fibrosis” calendar is now available for purchase online. Check out the new public service announcement, which first aired on December 6, 2012!

[audio:https://thebonnellfoundation.org/wp-content/uploads/2012/12/Bonnell-Foundation-CF-PSA-120612.mp3|titles=Bonnell Foundation PSA – December 2012]
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