July 11, 2024

More Than 70 Teens Gathered for Our 16th Annual Teen Advocacy Day  

During our 16th annual Teen Advocacy Day, more than 70 teens came together in-person and online to help ensure lawmakers better understand the needs of people living with cystic fibrosis and shine a spotlight on why the PASTEUR Act deserves immediate attention.  

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Are You Ready for Back-to-School Season? 

As back-to-school season approaches, you can help ensure your child's social, emotional, medical, and educational needs are met by requesting an individualized education program (IEP) or 504 plan. These plans can manage absences and treatments. Additionally, consider informing your child’s school about their cystic fibrosis to make it easier for staff to help your child reduce the risk of getting and spreading germs at school. 

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July is Ultraviolet (UV) Awareness Month

In July, we recognize UV Awareness Month to remind everyone to practice sun safety. People with cystic fibrosis who have had a transplant are at a greater risk of developing certain types of cancer, including skin cancer. Protect yourself by seeking shade when appropriate, wearing sun-protective clothing, and applying broad-spectrum, water-resistant sunscreen with an SPF of 30 or higher.

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Why We Took Our Son Off Trikafta

Even though Carolanne Cimino was heartbroken after learning about her son's cystic fibrosis diagnosis, she found hope in the drug Trikafta^®. However, on the CF Community Blog, she shares how the drug's side effects forced her to make the difficult decision to take him off the medication.

Read Carolanne's story »