As an adult with cystic fibrosis, I know just how powerful and creative the CF community can be. That's why I'm excited to announce the four 2017 Impact Grant awardees who are making a positive impact on the CF community.
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The CF Adult and Family Advisors (AFA) just got a fresh new look and name: Community Voice. By joining this group, people with cystic fibrosis and their family members have an active say in the Cystic Fibrosis Foundation's initiatives, driving improvements that benefit everyone impacted by CF.
On Aug. 27, leaders from the Cystic Fibrosis Foundation, along with several people from the CF community, participated in a virtual public meeting hosted by the Institute for Clinical and Economic Review to provide insights and expertise on the value of CFTR modulators.
The "65 Roses" story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses." Today, "65 Roses" is a term often used by young children with cystic fibrosis to pronounce the name of their disease.
As children with cystic fibrosis transition toward greater independence at school and at home, they will also take greater responsibility in managing their disease.
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A transformative leader for more than two decades, Marshall will transition to advisory role