Michigan residents with rare diseases could get more state support
By Vladislava Sukhanovskaya – Capital News Service
About a million Michiganders with rare diseases could receive better treatment if legislators establish a Rare Disease Advisory Council.
Read the story here
Laura Bonnell’s Night of Hope to defeat cystic fibrosis is Sept. 25
FOX 2 – A local family has made it their mission to help those living with cystic fibrosis and this year — their annual fundraiser will return to in-person for their “Night of Hope.”
Laura Bonnell is the founder of the Bonnell Foundation established 11 years ago to help families living with cystic fibrosis – a deadly genetic condition that impacts the lungs and other organs.
The Bonnell Foundations Laura Bonnell talks to WWJ’s Greg Bowman about the CF Awareness Film Festival
Listen to the interview:
How America’s Vaccine System Makes People With Health Problems Fight for a Place in Line
U of M doctor brings cystic fibrosis awareness to Egypt
Bonnell Foundation featured in the Arab American News
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
Bonnell Foundation featured in the STAT News
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
Bonnell Foundation featured in WEMU
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
Bonnell Foundation featured in Fox 2 News Detroit
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.
