The latest information for May 21, 2020


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Thursday, May 21, 2020

DONATE ([link removed])

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

www.cff.org ([link removed])

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Tell the Senate CF Families Need Paid Leave and Medicaid Funding 

On May 15, the U.S. House of Representatives passed the HEROES Act ([link removed]), the fourth major federal relief package to address COVID-19. Included in the package are two pieces of critical importance to the CF community: the expansion of paid leave for high-risk individuals and working family members, and increased federal funding for Medicaid. Now, we need the Senate to act swiftly to pass these provisions. Urge Congress to take action on expanding paid leave and Medicaid funding without delay. 

Send a message now » ([link removed])

ICYMI: Navigating Uncertainty Virtual Event

Check out a recording ([link removed]) from last night’s virtual event focused on tools for navigating uncertainty and managing dilemmas. Hear from CF community members about their experience and learn more from mental health professionals Shaina Blair and Stephanie Filigno about how you can better identify and communicate your needs and make decisions as we all “live in the grey.”
Watch the recording » ([link removed])

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From Mist Tents to Trikafta

When Mark Tremblay was diagnosed with cystic fibrosis in 1970, his daily care routine included percussive treatments, sleeping in a mist tent, isolating from others, and practicing rigorous infection control. Now at the age of 50, learn how his life has dramatically changed since starting Trikafta.
Read Mark's story » ([link removed])

Upcoming Virtual Events

Fri., June 5, 5 p.m. ET – Together: Celebrating 65 YearsJoin us to celebrate all we have achieved together over the past 65 years. Hear stories from members of the CF community, and have an opportunity to connect with other attendees as we move forward on the path to cure cystic fibrosis.
Register now » ([link removed])

Tues., June 9, 6 p.m. ET – Research Overview: Cystic Fibrosis-Related Diabetes
In a panel discussion, clinicians and members of the CF community will discuss current and upcoming research studies that aim to improve CFRD diagnosis and treatment. Plus, have an opportunity to ask your CFRD research-related questions during an audience Q&A.
Register now » ([link removed])





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

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