The latest information for July 8, 2021


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Thursday, July 8, 2021

Meet the Newest Members of Our Board of Trustees

Today, the Foundation announced changes on its Board of Trustees, ([link removed]) including the election of Jessica Boyd, MD, Dominic J. Caruso, and Paul Motenko as Trustees. James R. Butler II, Eric Schneider, MD, and Jennifer L. Taylor-Cousar, MD, have been elected to serve as non-voting advisors. We are thrilled to welcome these new leaders whose expertise reflect our most urgent priorities as we enter a new era in CF. Meet our new board members » ([link removed])

Contribute to CF Research From Home

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You can help advance cystic fibrosis research from home by sharing your everyday experiences on Trikafta ([link removed])® ([link removed]) in the HERO-2 study. ([link removed]) Participants will use Folia, an app to track their treatments and symptoms weekly and complete monthly check-ins. No additional clinic visits are required. Enroll in HERO-2 » ([link removed])

The HERO-2 study is being conducted by Indiana University with funding from the Cystic Fibrosis Foundation. The app powering the study was developed by digital health company Folia Health, and the data will be linked to the CF Foundation’s Patient Registry, a robust database that informs research and care of CF.

Assessing Risk During COVID-19

People with cystic fibrosis and their families may be wondering what daily activities are safe to return to after COVID-19 vaccination. Learn how you can use our COVID-19 risk-assessment tool, ([link removed]) which was developed with input from members of the CF community and clinicians, to help you navigate decisions with your family and CF care team. Download the COVID-19 risk assessment tool » ([link removed])

Advocating Alongside My Sister with CF

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Ever since she was young, Fiona's sister, Aine, shared her stories of living with cystic fibrosis to raise awareness of the disease. Over time, Aine's advocacy inspired Fiona to get involved, and for six years, Fiona has been sharing her experiences at Teen Advocacy Day. ([link removed]) This year, the sisters finally got to advocate together. Read the blog » ([link removed])

DONATE ([link removed])

Cystic Fibrosis Foundation
4550 Montgomery Ave, Suite 1100N
Bethesda, Maryland 20814

www.cff.org ([link removed])



4550 Montgomery Avenue, Suite 1100N | Bethesda, MD 20814 US

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