Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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More than 200 CF advocates from 47 states held nearly 400 meetings with members of Congress and their staff, and more than 850 advocates from across the country called their members of Congress as part of the CF Foundation's first March on the Hill online Day of Action.
If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.
Today, the U.S. Senate released its version of the health care reform bill, titled the Better Care Reconciliation Act, and in response, the Cystic Fibrosis Foundation affirmed its opposition to the legislation.
March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Yesterday, the U.S. Department of Health and Human Services finalized a rule expanding short-term, limited-duration insurance plans -- threatening access to adequate, affordable coverage for people with cystic fibrosis who rely on the individual marketplace.
When my wife and I found out that our daughter had cystic fibrosis, we decided to start maintaining a daily schedule for her CF treatment and care. Here are five ways that we uphold this routine and encourage our little girl to take an active role in her own care.
Having trouble finding things to keep your toddler occupied during treatments for cystic fibrosis? Here are five tips that do the trick for my 3-year-old son, Major.