Cystic Fibrosis Foundation · [email protected]

August 21, 2025 at 8:05 PM

Together: a Community Update

Announcing our 2025 Impact Grant recipients! August 21, 2025  Congratulations to Our 2025 Impact Grant Recipients Join us in congratulating the recipients of our 2025 Impact Grants: BreatheStrong CF Exercise Grants, The Familiar Pinch — Cystic Fibrosis Chronicles, Prioritizing You: A Well…

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  Cystic Fibrosis Foundation · [email protected]

August 12, 2025 at 7:51 PM

Research and care update: July and August edition

Our latest must-read developments July/August UpdateGENETIC THERAPIES Foundation Invests Additional Funds in Gene Editing Therapy We invested up to an additional $24 million in Prime Medicine to develop a gene editing therapy for people with cystic fibrosis. This new investment focuses on…

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  Cystic Fibrosis Foundation · [email protected]

August 7, 2025 at 8:19 PM

Together: a Community Update

Register for ROSE UP — Raise funds your way to help cure CF August 7, 2025  How Will You ROSE UP?   You’re invited to participate in ROSE UP — a nationwide fundraising event where you choose how to take action to help cure cystic fibrosis. Whether you’re playing pickleball, baking treats,…

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  Cystic Fibrosis Foundation · [email protected]

August 3, 2025 at 10:15 AM

CF Community Blog updates — Straight to your inbox!

Stay connected with the latest stories from the CF community     August 2025   CF Foundation Community Blog Digest What I’ve Learned From My Mental Health Journey With CF   By Devanshi Dubey, an adult with CF    “For many years, cystic fibrosis took a toll on my mental health — long …

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  Cystic Fibrosis Foundation · [email protected]

July 24, 2025 at 8:07 PM

Together: a Community Update

Learn how new legislation may affect your CF health coverage July 24, 2025  CF Foundation Commits Up to $24 Million in Additional Funds for Prime Medicine to Develop Gene Editing Therapy  The Cystic Fibrosis Foundation has committed up to $24 million in additional funds for Prime Medicine…

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  Cystic Fibrosis Foundation · [email protected]

July 10, 2025 at 8:19 PM

Together: a Community Update

Learn how new legislation may affect your CF health coverage July 10, 2025  Final Budget Reconciliation Bill May Pose Access Challenges for People With Cystic Fibrosis  Last week, President Trump signed into law legislation that will make it more difficult for some people with cystic fibr…

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  Cystic Fibrosis Foundation · [email protected]

July 6, 2025 at 10:15 AM

CF Community Blog updates — Straight to your inbox!

Stay connected with the latest stories from the CF community     July 2025   CF Foundation Community Blog Digest Living With CF While Homeless  By Nikki Melchiorre, an adult with CF    “Living with cystic fibrosis while facing homelessness has tested me in every way. However, throug…

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  Mary Dwight — Cystic Fibrosis Foundation · [email protected]

July 3, 2025 at 9:02 PM

The fight isn't over: Thank you for standing with us

Congress’s reconciliation bill passed — Here’s what comes next Dear Advocate,   Today, Congress passed the budget reconciliation package. Despite the persistent advocacy of the cystic fibrosis community, the final bill includes harmful cuts to Medicaid and the insurance marketplace — changes t…

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  Cystic Fibrosis Foundation · [email protected]

June 26, 2025 at 8:18 PM

Together: a Community Update

Explore new data from the Patient Registry Highlights Report June 26, 2025  Explore Highlights in Health Trends From the 2024 Patient Registry Our 2024 Patient Registry Highlights report is now available. It includes important data on people with cystic fibrosis in the U.S. who participat…

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  Mary Dwight - CF Foundation · [email protected]

June 26, 2025 at 1:07 PM

Advocate, we need your voice now more than ever

Tell Congress to reject harmful cuts to health care Advocate,   Right now, teens from across the country are advocating for the needs of the cystic fibrosis community on Capitol Hill at a critical moment — and we need your voice, too.   Congress is moving closer to a vote on dangerous cuts to …

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  Cystic Fibrosis Foundation · [email protected]

June 23, 2025 at 8:05 PM

Friend, your 65 Roses Club status is pending

There is still time to make an impact We are incredibly proud of the work we have accomplished together. On 65 Roses® Day (6/5), our 65 Roses Club grew to 2,200 members strong who contribute more than $1 million annually. These gifts provide a dependable stream of revenue that helps advance ca…

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  Cystic Fibrosis Foundation · [email protected]

June 18, 2025 at 2:50 PM

Join a growing community accelerating a cure

Help make CF a thing of the past On 65 Roses® Day, the 65 Roses Club welcomed 157 new members! Together, this dedicated group helps enable the Foundation to advance important work in CF research and care.   While we’re proud of what we’ve accomplished, we’re not done yet.   CF still has no …

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  Cystic Fibrosis Foundation · [email protected]

June 17, 2025 at 4:31 PM

One-on-one with Compass

Plan ahead with help from Compass One-on-one with Compass Prepare Early for a Successful School Year Give yourself or your child the tools to thrive in the year ahead Balancing school while living with cystic fibrosis can be challenging for both students and caregivers — but you’re not alone.…

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  Cystic Fibrosis Foundation · [email protected]

June 12, 2025 at 8:13 PM

Together: a Community Update

See what the CF community prioritizes in cure, care, and community June 12, 2025  Updated Median Predicted Survival Age for People With CF in the U.S.  According to 2024 Patient Registry data, the median predicted age of survival for people with cystic fibrosis born in the U.S. between 2…

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  Cystic Fibrosis Foundation · [email protected]

June 10, 2025 at 1:27 PM

Research and care update: May and June edition

Our latest must-read developments May and June UpdateNew: Interactive Patient Registry Highlights Report For the first time, our annual Patient Registry Highlights Report is now interactive, making it easier to explore trends in cystic fibrosis health data from nearly 34,000 participants.   …

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  David Elin – Cystic Fibrosis Foundation · [email protected]

June 9, 2025 at 3:41 PM

Pop-up CF advocacy webinar this Wednesday

It’s time to save health care coverage Advocate,   You’re invited to a pop-up webinar on Wednesday, June 11 at 2 p.m. ET, where we will share critical updates on potential cuts to health care coverage, discuss how these changes could impact people with cystic fibrosis, and share what steps you…

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  Cystic Fibrosis Foundation · [email protected]

June 5, 2025 at 1:06 PM

🌹 Happy 65 Roses Day! 🌹

Become a 65 Roses Club member It’s 65 Roses® Day! Today we celebrate the “65 Roses” story, which 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.”     Our 65 Roses Club members receive exclusive benef…

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  Cystic Fibrosis Foundation · [email protected]

June 1, 2025 at 10:15 AM

CF Community Blog updates — Straight to your inbox!

Stay connected with the latest stories from the CF community     June 2025   CF Foundation Community Blog Digest Why I Stride By Katherine Salimi, mother of a child with CF   “Growing up, I participated in Great Strides in honor of my cousin who has CF. Today, I stride with even mor…

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  Cystic Fibrosis Foundation · [email protected]

May 29, 2025 at 8:11 PM

Together: a Community Update

See our 2024 annual report May 29, 2025  Our 2024 Annual Report Is Here In 2024, the Foundation made exciting progress toward our mission. The FDA approved a new, once-a-day modulator for people with cystic fibrosis, Alyftrek. In addition, we supported clinical trials for transformative t…

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  Mary Dwight – CF Foundation · [email protected]

May 28, 2025 at 3:17 PM

The fight isn’t over: Help us stop Medicaid cuts in the Senate

Here’s what you can do Dear Advocate,   Thank you for joining the thousands of CF advocates who have raised their voices to protect Medicaid. Our fight is far from over.   The House has passed a budget reconciliation bill that includes devastating cuts to Medicaid, threatening the health and …

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  Cystic Fibrosis Foundation · [email protected]

May 27, 2025 at 3:01 PM

65 Roses Day is next week!

Join the 65 Roses Club Save the date: June 5 is 65 Roses® Day!     Every year, we recognize the 65 Roses story on June 5 (6/5). Since 1965, the term “65 Roses” has been used by children of all ages to describe cystic fibrosis. However, making the disease easier to say doesn’t make living wit…

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  Cystic Fibrosis Foundation · [email protected]

May 20, 2025 at 3:36 PM

Urgent: Stop harmful cuts to Medicaid 🚨

Medicaid is at risk — Call Congress now Dear Advocate,   We need your voice today.   Congress is moving quickly on a budget reconciliation package that includes devastating cuts to Medicaid — jeopardizing access to care for thousands of people with cystic fibrosis.    For more than half of chi…

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  Cystic Fibrosis Foundation · [email protected]

May 15, 2025 at 8:18 PM

Together: a Community Update

Read our position on proposed cuts to Medicaid May 15, 2025  CF Foundation Urges Congress to Reject Harmful and Reckless Cuts to Medicaid   As conversations around cuts to Medicaid continue on Capitol Hill, the CF Foundation is urging Congress to oppose any changes that may threaten or el…

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