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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.
The “Portraits of Cystic Fibrosis” calendar is now available for purchase online! The black and white calendars feature 20 people with CF who will inspire you. Calendars are $20. Click here to purchase and get more info. Want to hear our PSA? Listen below:
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Some health concerns if your child is taking Kalydeco. Read more. Click here: http://www.fda.gov/Drugs/DrugSafety/ucm316693.htm Please check back or email us with any questions. info@roadmaptocf.org
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.
Affordable Care Act supports families of children with special health care needs
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.”
Parents who have kids with the deltaF508 strain of cystic fibrosis will soon be able to breathe a little easier.
Results from the clinical trials by Vertex Pharmaceutical’s have stocks climbing. The drug company climbed 55 percent to $58.12 at the close of the New York trading on May 7th, 2012.
Click here to read the full article
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.
The University of Michigan C. S. Mott Children’s Hospital
1540 East Hospital Drive, Ann Arbor, MI 48109
(734) 936-6267
http://www.mottchildren.org
DMC Children’s Hospital of Michigan – Specialty Center Detroit
3901 Beaubien Street, Detroit, MI 48201
(313) 745-5267
http://www.childrensdmc.org
Children’s Special Health Care Services, North Oakland Health Center
1200 North Telegraph Road, Building 34E, Pontiac, MI 48341
(248) 858-0056 or (800) 758-9925
http://www.oakgov.com/health/
Helen DeVos Children’s Hospital
100 Michigan Street Northeast, Grand Rapids, MI 49503
(616) 391-1824
http://www.helendevoschildrens.org
DMC Harper University Hospital
3990 John R, Detroit, MI 48201
(888) DMC-2500
http://www.harperhutzel.org
Michigan State University Kalamazoo Center For Medical Studies
1000 Oakland Drive, Kalamazoo, MI 49008
(269) 337-6433
http://www.kcms.msu.edu
Hurley Children’s Hospital
One Hurley Plaza, Flint, MI 48503
(810) 262.9000
http://www.hurleymc.com/childrens-hospital
Michigan State University Cystic Fibrosis Center
1200 East Michigan Avenue, Suite 145, Lansing, MI 48912
(517) 364-5440
http://www.phd.msu.edu