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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:

WWJ Newsradio 950 Coverage of 2013 Holiday Fundraiser

WWJ Newsradio 950’s Marie Osborne reported on The Bonnell Foundation’s holiday fundraiser. Lois Teicher, sculptor and Grandmother to Molly and Emily Bonnell (who both have cystic fibrosis and are the daughters of our Founder, Laura Bonnell) has designed holiday cards for Christmas and Hanukkah, which are currently for sale.

Read the WWJ Newsradio 950 News Report
Listen to the audio: Part 1 | Part 2

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]

Public Service Announcements for CF awareness month

Public Service Announcements heard on CBS radio stations in Detroit 2012-13 (coming soon)

Listen to the public service announcements heard on WWJ Newsradio 950 – May is CF Awareness month.

[audio:https://thebonnellfoundation.org/wp-content/uploads/2012/05/Bonnell-PSA-30-w-music.mp3|titles=CF Awareness month]


[audio:https://thebonnellfoundation.org/wp-content/uploads/2012/05/Bonnell-PSA-60-w-music.mp3|titles=CF Awareness month]
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