Innovation – A Mother’s Story
Breakthrough cures for cystic fibrosis start by promoting science and innovation.
Michigan mom fighting for daughters with cystic fibrosis
Laura Bonnell, the founder of a foundation bearing her family’s name, is working to make sure people with rare diseases get representation in Michigan.
Read the story here
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 advocates are finding purpose, building powerful support systems and working toward better outcomes for the rare disease community. Here are three stories that bear testament to their challenges – and their resilience.
Read the story here
Living with Cystic Fibrosis: I’m Laura Bonnell and This is My Story
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
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.
