Rare but not Alone: 1 in 10 Live with a Rare Disease
By Institute for Patient Access The 30 million Americans diagnosed with a rare disease represent a large, underserved patient population. Their complex conditions are often poorly understood, and most have no approved treatment. Nevertheless, rare disease patients and...
Living with Cystic Fibrosis: I’m Laura Bonnell and This is My Story
BioMatters - Winter 2022, Patient Advocate Issue by MichBio - Issuu Read the story here
Laura Bonnell talks about the Rare Disease Advisory Council (RDAC) and cystic fibrosis on local NPR station, WDET in Detroit.
Bonnell was interviewed by Tia Graham and on the Morning Edition show with Pat Batchelor. Listen to the interview:
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
By Amy Lange and David Komer online producer, FOX 2 Detroit 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...
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
Bonnell Foundation featured in the NY Times "Fighting for a place in line" for the covid vaccine. Thanks to Amy Harmon, a NY Times Pulitzer prize winning journalist for telling not only our story, but the story of so many others with chronic and fatal conditions who...
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...
‘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...
FDA Listening Session: COVID 19 Impact on Rare Disease Communities
Laura Bonnell, Founder of the Bonnell Foundation talks about the need and scarcity of PPE in the CF community. Bonnell was asked to speak in the National Organization for Rare Disease Disorders (NORD). You can see her at about 25:45 in this video.
