Cystic Fibrosis Foundation · [email protected]

October 30, 2025 at 8:12 PM

Together: a Community Update

Honoring CF Foundation Co-Founder and Trailblazer, Doris Tulcin October 30, 2025  Honoring CF Foundation Co-Founder and Trailblazer, Doris Tulcin We are deeply saddened to share that Doris Tulcin, co-founder of the Foundation and an advocate for people with cystic fibrosis, has passed awa…

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  Cystic Fibrosis Foundation · [email protected]

October 28, 2025 at 7:08 PM

Your NACFC recap is here

Watch the highlights At this year’s North American Cystic Fibrosis Conference (NACFC), scientists and clinicians from around the world came together to discuss the latest advances in CF research and care. In case you missed it, catch up on the highlights now. NACFC HIGHLIGHTS  Plenary 1 Six…

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  Cystic Fibrosis Foundation · [email protected]

October 22, 2025 at 3:17 PM

NACFC starts tomorrow!

Have you saved your seat? The North American Cystic Fibrosis Conference (NACFC) starts tomorrow! This annual meeting brings together scientists and clinicians from around the world to discuss the latest advances in CF research and care.   Log in to the virtual NACFC platform to watch the three…

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  Cystic Fibrosis Foundation · [email protected]

October 20, 2025 at 3:12 PM

Your guide through open enrollment

Get free, one-on-one support from Compass to make confident choices CONTACT COMPASS CONTACT COMPASS   Open enrollment is your chance to make sure your health insurance works for you — but it’s not always as simple as sticking with the same plan.    It’s easy to assume that if you…

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  Cystic Fibrosis Foundation · [email protected]

October 16, 2025 at 8:12 PM

Together: a Community Update

Learn about our investment in 4D Molecular Therapeutics October 16, 2025  CF Foundation Is Investing Up to $11 Million to Support Ongoing Gene Therapy Trial  We are investing up to $11 million in 4D Molecular Therapeutics to continue testing its inhaled gene therapy in people with cystic …

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  Cystic Fibrosis Foundation · [email protected]

October 7, 2025 at 5:16 PM

Research and care update: September/October edition

Our latest must-read developments September/October UpdateGENETIC THERAPIES Foundation Invests an Additional $3 Million in Messenger RNA Therapy We have invested an additional $3 million in ReCode Therapeutics to provide further support for an ongoing Phase 2 clinical trial of its messeng…

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  Cystic Fibrosis Foundation · [email protected]

October 5, 2025 at 10:15 AM

CF Community Blog updates — Straight to your inbox!

Stay connected with the latest stories from the CF community     October 2025   CF Foundation Community Blog Digest The Transplant I Wasn’t Ready For     By Mary Delany-Hudzik, an adult with CF    “My world was turned upside down in just a few weeks when a routine exacerbation quickl…

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  Cystic Fibrosis Foundation · [email protected]

October 2, 2025 at 8:09 PM

Together: a Community Update

Learn about our investment in ReCode Therapeutics October 2, 2025  CF Foundation Invests Additional $3 Million to Test mRNA Therapy  We have invested an additional $3 million in ReCode Therapeutics to provide further support for an ongoing Phase 2 clinical trial of its inhaled messenger R…

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  David Elin - CF Foundation · [email protected]

October 2, 2025 at 6:31 PM

Tell Congress: Health care and research funding can’t wait

Tell Congress to reject harmful cuts to health care Advocate,   Congress has unfinished business — and the health of millions of Americans is on the line.   Right now, many families — including those living with cystic fibrosis — rely on enhanced Advance Premium Tax Credits (eAPTCs) to afford…

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  Cystic Fibrosis Foundation · [email protected]

September 25, 2025 at 7:51 PM

One-on-one with Compass

Open enrollment is almost here — are you ready to choose a plan? One-on-one with Compass Prepare for open enrollment season Start with the essentials Health insurance can be challenging to understand — from unfamiliar terms to various plan types. Our guide breaks down health insurance in simp…

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  Cystic Fibrosis Foundation · [email protected]

September 24, 2025 at 2:51 PM

The North American Cystic Fibrosis Conference is in one month!

Register to join us online Oct. 23-25 The North American Cystic Fibrosis Conference (NACFC) is back Oct. 23-25! Register today Don’t miss your chance to hear the latest advances in cystic fibrosis research and care during three plenaries, as well as six sessions selected by members of the …

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  Cystic Fibrosis Foundation · [email protected]

September 18, 2025 at 8:17 PM

Together: a Community Update

Learn about our investment in SNIPR Biome September 18, 2025  CF Foundation Invests Up to €6.5 million ($7.6 million) to Develop Engineered Phage Therapy We invested up to €6.5 million ($7.6 million) in SNIPR Biome to help develop a phage therapy to eliminate persistent Pseudomonas infec…

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  David Elin - CF Foundation · [email protected]

September 16, 2025 at 2:06 PM

Urgent: Protect CF research

Tell Congress to reject harmful cuts to health care Advocate,   The President's Fiscal Year 2026 budget request proposed deep cuts to the National Institutes of Health (nearly 40%) and the U.S. Food and Drug Administration (nearly 12%), agencies whose work is essential to advancing cystic fibr…

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  Cystic Fibrosis Foundation · [email protected]

September 14, 2025 at 10:15 AM

CF Community Blog updates — Straight to your inbox!

Stay connected with the latest stories from the CF community     September 2025   CF Foundation Community Blog Digest How Cystic Fibrosis Shaped My School Years    By Daelyn James, an adult with CF    “Growing up with CF made school challenging — not only because of hospitalizations …

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  Cystic Fibrosis Foundation · [email protected]

September 4, 2025 at 8:13 PM

Together: a Community Update

Don't miss our upcoming virtual events! September 4, 2025  Register to Watch the North American Cystic Fibrosis Conference (NACFC) Virtually  Join us online Oct. 23-25 to hear the latest advancements in cystic fibrosis research and care from NACFC. Watch three plenaries and six sessions s…

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  David Elin – Cystic Fibrosis Foundation · [email protected]

September 3, 2025 at 2:35 PM

You’re invited: CF advocacy webinar September 10

Register now to help protect CF research and drug development Advocate,   You’re invited to join us Wednesday, September 10 at 3 p.m. ET for a cystic fibrosis advocacy community update.   With a critical federal funding deadline approaching, Congress is making decisions that could directly im…

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  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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  Cystic Fibrosis Foundation · [email protected]

May 4, 2025 at 10:50 AM

CF Community Blog updates — Straight to your inbox!

Stay connected with the latest stories from the CF community     May 2025   CF Foundation Community Blog Digest My Experience Advocating for My CF Patients By Aaron Trimble, a CF physician   “As a CF physician, I recently had the opportunity to advocate on Capitol Hill for the first t…

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  Cystic Fibrosis Foundation · [email protected]

May 1, 2025 at 8:20 PM

Together: a Community Update

May is Cystic Fibrosis Awareness Month May 1, 2025  May is Cystic Fibrosis Awareness Month  May is Cystic Fibrosis Awareness Month, a month-long celebration of you — the individuals, families, and supporters who make up the CF community. This year’s theme, “Defining the Future Together,” …

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  Cystic Fibrosis Foundation · [email protected]

April 30, 2025 at 8:18 PM

May is Cystic Fibrosis Awareness Month

Celebrate 70 years of progress with us!   Cystic Fibrosis Awareness Month starts tomorrow! May is a month-long celebration of you — the individuals, families, and supporters who make up the CF community.   This year’s theme, “Defining the Future Together,” recognizes 70 years of progress i…

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  Cystic Fibrosis Foundation · [email protected]

April 29, 2025 at 8:05 PM

Get your questions answered at ResearchCon!

ResearchCon is May 6 ResearchCon is almost here! Don’t miss out on your opportunity to interact directly with leading clinicians and researchers who are shaping the future of cystic fibrosis treatment and care during this one-day, virtual event May 6.   REGISTER NOW ResearchCon is for e…

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  David Elin, CF Foundation · [email protected]

April 22, 2025 at 1:13 PM

Advocacy in Action: Join the fight

Protecting patients and progress April 22, 2025  With the 119th Congress well underway, the cystic fibrosis community is continuing a steady drumbeat of advocacy to educate Congress about the vital importance of protecting the National Institutes of Health, the U.S. Food and Drug Administrat…

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  Cystic Fibrosis Foundation · [email protected]

April 17, 2025 at 8:11 PM

Together: a Community Update

Read our top policy priorities for 2025 April 17, 2025  CF Foundation Outlines Its Policy Priorities to Congress and the Administration   In recent letters to Congress and the Administration, we outlined our top policy priorities for the cystic fibrosis community and urged policymakers to…

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  Cystic Fibrosis Foundation · [email protected]

April 10, 2025 at 2:41 PM

Research and care update: March/April edition

Our latest must-read developments March/April UpdateHighlights Study for people not on modulators Newborn screening recommendations published Register for ResearchCon Genetic Therapies Webinar Recording Is Available In case you missed it, you can watch the recording of our latest webinar o…

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  Cystic Fibrosis Foundation · [email protected]

April 6, 2025 at 11:50 AM

CF Community Blog updates — Straight to your inbox!

Stay connected with the latest stories from the CF community     April 2025 CF Foundation Community Blog Digest We’re excited to bring you monthly updates featuring the latest CF Community Blog stories — written by the community, for the community. These personal insights and experiences…

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  Cystic Fibrosis Foundation · [email protected]

April 3, 2025 at 8:25 PM

Together: a Community Update

International journal publishes newborn screening recommendations April 3, 2025  International Journal Publishes Cystic Fibrosis Newborn Screening Recommendations   We celebrate the publication of recommendations to improve newborn screening for cystic fibrosis across the United States. T…

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  Cystic Fibrosis Foundation · [email protected]

April 2, 2025 at 3:30 PM

Join us at ResearchCon May 6

Hear the latest in CF-related science, research and clinical care Join us at ResearchCon May 6! Everyone in the cystic fibrosis community is invited to this one-day, virtual event to discuss the latest in CF-related science, research, clinical care, and the lived experience alongside others l…

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  Cystic Fibrosis Foundation · [email protected]

March 27, 2025 at 3:36 PM

Your idea could make a difference in the CF community 

Move your vision forward with an Impact Grant   There’s still time to submit your application for a 2025 Impact Grant! Your experience with cystic fibrosis gives you a unique insight into what truly matters, and your perspective could be exactly what’s needed to make a meaningful impact.  …

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