An Update from the Michigan State University Cystic Fibrosis Center
To say this is an interesting time in the care of those with cystic fibrosis is obviously a massive understatement. In October of 2019 we shared the joy with the CF community of a highly effective modulator therapy becoming available, at some point, to most people with CF. Six short months later we were dealing with the fear and uncertainty of a respiratory pandemic.
Read the full story here by Dr. Ryan Thomas, M.D., MSU Clinic
U of M doctor brings cystic fibrosis awareness to Egypt
Doctors in Egypt weren’t aware of the prevalence of Cystic Fibrosis (CF) in their country until the efforts of a University of Michigan professor brought the disease to light.
CF is genetic disease that causes chronic and fatal lung infections and interferes with digestion.
Doctors have been testing newborns for CF in the U.S. since the mid-1960s. This isn’t the case in other countries. In fact, some health experts do not acknowledge that the genetic disease exists in their countries.
Dr. Samya Nasr, professor of pediatrics at the University of Michigan Medical Center, returned to her native Egypt to try to convince doctors that cystic fibrosis existed there.
‘Frustrated and panicking’: For some rare disease patients, shortages of protective gear pose a continued threat
When the coronavirus sent cities across the United States into shutdown in March, Laura Bonnell realized that her family’s supply of masks and disinfectant wipes was quickly running out.“We didn’t have any N95 masks and we only had about 20 disposable masks,” said Bonnell, whose two daughters have cystic fibrosis, a rare genetic condition that makes infections easier to catch and harder to get rid of by producing a thick, sticky mucus that traps germs in the lungs.
COVID Precautions Are Familiar To CF Patients For Whom Mask Wearing Is More Important Than Ever
People with cystic fibrosis (CF) are all too familiar with washing their hands, avoiding germs, and socially distancing. That is what they must do to stay healthy even when we’re not in a pandemic.
WEMU’s Lisa Barry talks with the creator and executive director of The Bonnell Foundation-Living With Cystic Fibrosis, Laura Bonnell, about her two daughters who have CF. They have received their lifelong medical treatment at Michigan Medicine in Ann Arbor and face even more serious health challenges due to COVID-19.
Family’s foundation fighting cystic fibrosis to have virtual fundraiser for Night of Hope
FOX 2 – One family fighting cystic fibrosis turned their fear into fundraising and this year they are going virtual.
Laura Bonnell has big plans for Sept. 26 – it’s the Bonnell Foundation’s virtual Night of Hope celebration, raising money for people impacted by cystic fibrosis.
Small Talk with Mark S. Lee (910 The Superstation and the Lee Group)
Mark S. Lee talks about people making a difference in their communities. Special guest Laura Bonnell with The Bonnell Foundation.
Laura Bonnell of the Bonnell Foundation for Cystic Fibrosis on Michigan Motors Forward
The Cystic Fibrosis community has been “social distancing” since before the term even existed. Having a genetic disease that causes chronic and fatal lung infections causes a need for CF patients to remain six feet apart from one another. Listen to Laura Bonnell on the Michigan Motors Forward on Apple podcasts.
Social Lights – Future Columns and Events
The Bonnell Foundation’s Virtual Night of Hope made the list of events on the calendar on the Social Lights by Sally G. Check out the article here:
Need COVID-coping tips? Ask a kid with cystic fibrosis
Elizabeth Warner has been social-distancing since before all the kids were doing it. Sheltering in place, too.
Hey, it beats coughing up blood.
Warner, 18, and her twin Catherine have cystic fibrosis, with its raft of hazards: lung infections, inflammation, respiratory failure, attacks on other organs. Among other things, they need to avoid flu and colds like the plague.
(Photo: Clarence Tabb Jr., The Detroit News)
Mark S. Lee talks to Laura Bonnell on 910am The Superstation about Cystic Fibrosis Awareness month
Mark S. Lee talks to Laura Bonnell about Cystic Fibrosis, the progress that has been made, the misconceptions, bringing about awareness, and how this pandemic is affecting the CF community.
Listen to the audio of the interview: