Our mission is to help educate parents and find a cure for Cystic Fibrosis, so that one day no CF parent will experience the pain and loss of losing a child to this disease.
The purpose of The Bonnell Foundation is to provide tools to navigate the difficulties of living with CF. We strive to connect families with resources through their CF journey. With our website, Roadmap to CF baskets, medical and academic scholarships, we hope to equip families with a roadmap to guide their way.
Join The Bonnell Foundation Thursday, May 8th, 2014 at CF Family Night.
It’s a time to meet other CF parents, enjoy a casual dinner and hear from some CF experts. It will be informative, touching and inspirational. Our guests range from an attorney who can talk about knowing your rights and CF, an adult and teenager with CF, to Dr. Samya Nasr at The University of Michigan, to a nurse at Children’s Hospital of Michigan, Shelly Frances with the CF Foundation, a lawmaker (what you can do as a CF parent) and more. Be our guest. It is not necessary to R.S.V.P but appreciated to plan for food. WHERE: Emagine Theater in Royal Oak, 200 N. Main Street WHEN: 6:00 – 7:30pm
One lucky family will go home with 4 tickets to a Detroit Tiger game (September 9th against the Kansas City Royals).
The “Portraits of Cystic Fibrosis” calendar is now in production! The black and white calendars feature people with CF who will inspire you. Calendars are $20. Click here for more information. Want to hear our PSA? Listen below:
We hope you were able to come see the game. It was so much fun! It was extremely hot but the players gave it their all. Thanks to everyone who played, volunteered or showed up and bid on our silent auction.
FOX 2 Detroit’s Charlie Langton talks with Emily Bonnell, who is living with Cystic Fibrosis, about the Bonnell Foundation’s Celebrity Baseball Game in a special public service announcement. Watch here:
For more information and to purchase tickets to the game, click here.
Health and Human Services (HHS) Secretary Kathleen Sebelius today announced $4.9 million in Affordable Care Act funding to support Family-to-Family Health Information Centers, primarily non-profit organizations run by and for families with children with special health care needs.
“These centers provide the information that families need to make health care decisions that are right for their children,” Secretary Sebelius said. “Family-to-Family Health Information Centers are a good investment, and have a measurable and positive impact on families, and communities.”
The FDA has approved KalydecoTM (ivacaftor), the first medicine to treat the underlying cause of cystic fibrosis (CF), a rare, genetic disease. Kalydeco is approved for people with CF ages 6 and older who have at least one copy of the G551D mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. Approximatel 1,200 people in the United States, or 4% of those with CF, are believed to have this mutation.
Kalydeco was granted approval in approximately 3 months, making it one of the fastest FDA approvals ever and marking the second approval of a new medicine from Vertex in less than a year.