For people with cystic fibrosis, our story is the most powerful tool we have to stand up for ourselves and fight for our needs. Although I can't always be there to share my story with legislators in person, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action to make my voice heard.
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Starting solid foods is very important for the development and health of babies with cystic fibrosis.
At this age, you will want to start serving high-calorie finger foods and gradually boost calories with safe solid foods. It is important to create a routine and set time limits at mealtime.
Children with cystic fibrosis ages 3 to 7 learn by watching their family, parents, teachers, and friends. They like to be independent but need limits and structure. Have planned meals and snacks.
Participating in clinical trials can be scary, but the sense of empowerment you get from knowing that you are contributing to a cure outweighs any second thoughts.
Although I wasn't sure that I'd still be thriving and working at the age of 44, I was fortunate enough to have people who encouraged me to plan for the future despite my CF diagnosis. That's why I'm pleased to introduce a new resource available from the Cystic Fibrosis Foundation.
An Impact Grant from the CF Foundation allowed my program, the Mothers' Retreat Program, to provide a space for moms of children with CF to get together and learn new approaches for addressing self-care, anxiety, and depression.
Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
Three of our Impact Grant awardees tell us how the program has allowed them to make a difference.
To help ensure your child's social, emotional, medical, and educational needs are being met at school, you may consider requesting an evaluation for an individualized education program or a 504 plan through your child's school.