City of Royal Oak officially proclaimed May 2024 CF Awareness Month!
The City of Royal Oak officially proclaimed May 2024 as CF Awareness Month! Thanks to Mayor Mike Fournier and commissioners for recognizing this rare disease. Thanks also to the families that came to show their support and represent their nieces and adult children...
Michigan Proposes Advisory Council for Rare Diseases, Gaining Bipartisan Support
By WJR 760-AM Let's get the Rare Disease Advisory Council passed. Thanks to Marie Osborne at WJR radio (along with Tom Jordan) for doing the interview with our Laura Bonnell. The RDAC will help the 1 million people in Michigan with a rare disease. Governoer Whitmer...
Why It’s Important That Doctors Advocate for Their Patients With Rare Disease
By Laura Bonnell, CF Contributor In medical school, future physicians learn how the human body works, about medical procedures, hospital hierarchy, and how to work with patients. What they’re not learning about is current state and federal legislation. I believe...
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...
Chronically Ill in a War Zone
by ROBIN SCHWARTZ An Israeli mother of three shares how she’s coping with cystic fibrosis amid the war. Read the article here
Bonnell: Prescription drug board threatens development of rare disease drugs
For those of us who have loved ones living with a currently incurable disease, our hopes of finding a cure are at risk due to unintended consequences of policy changes by lawmakers in Lansing and Washington D.C. Read the full article here
CF Foundation – CF Speaker Series featuring passionate people making a difference in the lives of people with CF
Will Corcoran in his CF Speaker Series mentions Laura Bonnell as an amazing advocate and change maker for the CF community. Click here to listen
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...
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...
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...
