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 through yearly lectures and workshops at different national and international conferences in Egypt and universities. I also began visiting children’s hospitals in Cairo and following CF patients there. In addition, I led a study on a high-risk patient at Cairo University, Children’s Hospital in collaboration with a team of Cairo University physicians and Stanford University geneticists.
Read the full article here
Affordable Care Act Anniversary News Conference
The Bonnell Foundations Laura Bonnell participated in a news conference that was red on WWJ celebrating the anniversary of the Affordable Care Act. Thanks to Rep. Elissa Slotkin and Protect Our Care of Michigan for organizing. Thanks to WLNS, MIRS, WOOD TV, WWJ, and The Detroit News.
Payer Programs – All Sides Speak Up (Including our Laura Bonnell)
ViewPoints: Patients with cystic fibrosis not alone in grappling with payer copay adjustment programmes
by Jessica D’Amico
Like so many others among the 40,000 Americans living with cystic fibrosis (CF), Molly and Emily Bonnell were waiting for a cure. While the advent of Vertex Pharmaceuticals’ CF transmembrane conductance regulator (CFTR) modulators in 2012 represented a major breakthrough, Kalydeco (ivacaftor) and its successors — Orkambi (ivacaftor and lumacaftor) and Symdeko (tezacaftor/ivacaftor and ivacaftor), FDA approved in 2015 and 2018, respectively — offered relatively modest efficacy and were not applicable to as large a population as Trikafta (elexacaftor/tezacaftor/ivacaftor).
“When Trikafta came out, I literally was sobbing because I thought finally my girls are going to live,” Molly and Emily’s mother Laura Bonnell, founder and president of The Bonnell Foundation, said. “It meant everything.”
WJR community interview with Vanessa Denha
“It’s Your Community” | Sundays 6 to 6:30 a.m.
Each Week, WJR‘s “It’s Your Community” focuses on the names, faces, and happenings that are affecting our community. Join your host Vanessa Denha Garmo as she meets with community leaders, experts, and insiders to ask the questions that everyone is thinking. This week’s episode features Laura Bonnell.
Living with Cystic Fibrosis podcasts featured in Michigan Family Connections Newsletter
Living with Cystic Fibrosis podcasts are available and are for anyone who wants to learn and be inspired, even those not associated with a diagnosis of Cystic Fibrosis.
Read the feature on page 2 of the Michigan Family Connections Newsletter here
WJR community interview with Vanessa Denha
“It’s Your Community” | Sundays 6 to 6:30 a.m.
Each Week, WJR‘s “It’s Your Community” focuses on the names, faces, and happenings that are affecting our community. Join your host Vanessa Denha Garmo as she meets with community leaders, experts, and insiders to ask the questions that everyone is thinking. This week’s episode features Laura Bonnell.
WJR Interview with Laura Bonnell
Thanks to Marie Osborne, Steve Courtney and Dave Riger at WJR for doing such a wonderful interview with Laura Bonnell. The group talked about Bonnell’s travels to Egypt and all things CF, including the work done by her Foundation.
Former Detroit radio voice takes cystic fibrosis fight to Egypt
By Neal Rubin, Detroit Free Press
Laura Bonnell had a translator, because the parents in the room were mostly poor, and it’s typically the wealthy in Egypt who are most comfortable with English. When the screen filled with a picture of her daughters, though — her strong, beautiful, living, 27- and 25-year-old babies — there was no need for words. The universal language was tears.
Cystic Fibrosis Awareness Month: Foundation raises money to help those with rare disease
By Amy Lange, FOX 2 Detroit
The Bonnell Foundation Founder, Laura Bonnell talks to Fox 2 News reporter/anchor Amy Lange about the importance of raising awareness about cystic fibrosis, fundraising and making people understand that anyone can be born with the disease, including people of color. Our Hispanic page debuts in this news segment!
Innovation – A Mother’s Story
Breakthrough cures for cystic fibrosis start by promoting science and innovation.
