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About the Rare Disease Advisory Council
What’s Wrong with ICER?
Sometimes economists can have more control than your doctor about whether you get the medicine that treats your condition.
May is National Cystic Fibrosis Awareness Month
Cystic Fibrosis (CF) affects more than just the lungs. This genetic disease causes constant lung infections, but it also impacts other organs in the body where mucus builds up.
While there is still no cure for CF, advancements in treatment have made it possible for those with CF to live much longer than ever before. However, they live under the risk of infection and health problems due to CF. A cure is still needed.
Ways to Help
CF Task Force Raises Awareness
The Bonnell Foundation: Living with Cystic Fibrosis and Rock CF organized the CF Task Force in January of 2017 to make certain that we were raising awareness as a CF community. Our hope since then has been that lawmakers will use us as a resource when making decisions that will impact people with CF and even people with other chronic illnesses. We meet periodically to discuss our concerns (healthcare, awareness, preexisting conditions and more). We encourage you to get involved. Please shoot us an email at: thebonnellfoundation@gmail.com.
“I am glad to be part of the CF Task Force because we have to stick together as a CF community and raise awareness to local legislators and anyone who will listen.” — Laura Hartson
Laura Bonnell Speaks to Michigan Governor Rick Snyder About Medicaid Issues for People with CF
Governor Rick Snyder talking to Laura Bonnell about Michigan Medicaid issues for people with CF. And Chris Priest, Director of Michigan Medicaid in a meeting to recommend approval of Orkambi for patients on Managed Medicaid.
Advocating For CF In Washington D.C.
Bonnell Foundation president Laura Bonnell and daughter Emily traveled to Washington D.C. March 30th-31st, 2011 to advocate for CF. They visited Rep. Sander Levin’s office and also met with Representatives Gary Peters, Bill Huizenga and John Dingell.
The Bonnell Girls Advocate For CF
The Bonnell girls met with Rep. Gary Peters in August 2010. He joins the CF caucus. Rep. Peters helped pass the Clinical Trials Bill into law. The girls are pictured with U.S. Senators Carl Levin and Debbie Stabenow, who passed the bill too. A huge thank you.
Become an advocate for CF
You can join The Bonnell Foundation to speak out and take action on behalf of Cystic Fibrosis. Fill out our Volunteer Form; it’s a great place to get started, and we’ll contact you with opportunities to help the cause!
