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Cystic Fibrosis Foundation
1,357 followers
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Cystic Fibrosis Foundation's posts

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How can you turn your favorite pastime into a fundraising event? Whether you enjoy scrap booking, running 5Ks, or hosting dinner parties for your friends, Passion Fundraising can turn your hobby into a unique event. 

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Once you're on the waiting list for a transplant, it's time to wait for the call. Rima Manomaitis, an adult living with cystic fibrosis who recently received a double-lung transplant, shares how she handled the two dry run calls leading to her transplant. 

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Today is the last day to register for CF MiniCon: Young Adult! Whether you want to talk about maintaining good mental health, advocating for your own care, or coping with feelings of being left behind by your peers, CF MiniCon will offer young adults with CF a virtual space to connect, share, and inspire members of the community facing life transitions.

Register today: www.cff.org/minicon 

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"In fact, I love every scar on my body, as each one tells a story of how I am still alive and breathing."

Kassandra Case, an adult living with cystic fibrosis, has had more than 120 surgeries in her lifetime -- which come with numerous visible scars. Today on the CF Community Blog, she shares how a change of perspective helped her learn to love her scars, body, and herself.

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Results from three new early stage studies suggest next-generation combination therapies could be significantly more effective than current FDA-approved modulators and potentially benefit more people with CF than ever before. The findings are the first to demonstrate the potential of next generation modulators to treat the underlying cause of CF in people with a single F508del CFTR mutation.

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Graduating college or starting your first job are exciting milestones for everyone, but when you have cystic fibrosis, these accomplishments may come with some unexpected challenges. Today on the CF Community Blog, Kathleen Mullins, an adult living with CF, shares why she is excited to talk about these topics and more at our upcoming CF MiniCon: Young Adult.

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When Josh Llewellyn-Jones was diagnosed with cystic fibrosis, his parents were told that he would be lucky to live until he was 30. Now, he's celebrating his milestone birthday in two weeks with a 24-hour fitness challenge to raise awareness for CF. 

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Today, the Cystic Fibrosis Foundation, along with nine other organizations, issued a statement in response to the revised Senate health care bill. This legislation is unacceptable for people living with cystic fibrosis or other chronic diseases or disabilities. We urge Congress to defeat the Better Care Reconciliation Act and any other bill that does not protect affordable, accessible, and adequate health care coverage for the CF community. 

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Shortly after Jesse DaCosta's fiancee, Ashley, told him about her cystic fibrosis, they got engaged. But just months later, she passed away. Today on the CF Community blog, Jesse opens up about their story and how he is coping.

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If you’re a young adult with cystic fibrosis, you're invited to CF MiniCon: Young Adult! Created by and for adults living with CF, CF MiniCon is a virtual space to connect with other young adults in the CF community to share your life experiences and challenges.

Register today: http://on.cff.org/2slxwI4
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