Cystic Fibrosis Foundation · [email protected]

December 12, 2024 at 9:23 PM

Together: a Community Update

Our latest CF research update December 12, 2024  CF Research Update The Cystic Fibrosis Foundation has agreed to invest up to $15 million in ReCode Therapeutics to fund the development of a gene editing therapy for people with CF.     Read the announcement »   COST-CF Survey Results…

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  Cystic Fibrosis Foundation · [email protected]

December 11, 2024 at 7:05 PM

Thank you for sharing your experience with health care costs

Read the results from the 2024 cost burden survey Earlier this year, the Cystic Fibrosis Foundation and Dartmouth College, asked you to share your experiences with health care costs and how they may impact you and your family. You generously shared your experiences, and the results are now avai…

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  Cystic Fibrosis Foundation · [email protected]

December 10, 2024 at 8:27 PM

You're the key to a cure

Make a difference this holiday season Joseph Rosano, a pharmacist from Connecticut, has no personal connection to cystic fibrosis.   However, after being nominated for Connecticut’s Finest, an event hosted by the CF Foundation that recognizes outstanding professionals, he felt compelled to d…

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  Cystic Fibrosis Foundation · [email protected]

December 4, 2024 at 5:24 PM

GivingTuesday has ended, but our work has not

Make an impact by donating now The strength and support of the cystic fibrosis community continues to amaze us.   We reached our GivingTuesday goal, and thanks to our supporters and the generosity of the Stremick family, we raised critical funds needed to advance CF research and improve the …

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  Cystic Fibrosis Foundation · [email protected]

December 4, 2024 at 12:18 AM

GivingTuesday is almost over ...

Lock in your donation before midnight CF Foundation Supporter, GivingTuesday is almost over — but it’s not too late to show your support for the cystic fibrosis community. MAKE YOUR GIVINGTUESDAY GIFT People with CF, like Amanda, continue to face significant challenges.   “At 27, I mad…

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  Cystic Fibrosis Foundation · [email protected]

December 3, 2024 at 7:16 PM

We need your support this GivingTuesday

Help us unlock the match! This GivingTuesday, your donation will have double the impact, thanks to a $250,000 matching gift from the Stremick family. Your matched donation lays the foundation for tomorrow’s breakthroughs and helps ensure we can continue to support high-quality, specialized c…

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  Cystic Fibrosis Foundation · [email protected]

December 3, 2024 at 12:24 PM

2X the impact for GivingTuesday

Children like Bradley are counting on YOU Today is GivingTuesday and we are counting on YOU to double the impact for people with cystic fibrosis. Thanks to the Stremick family, your donation will be matched, dollar-for-dollar up to $250,000. DOUBLE YOUR GIFT While innovative treatments h…

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  Cystic Fibrosis Foundation · [email protected]

December 2, 2024 at 4:30 PM

Our GivingTuesday match starts TODAY!

Donate now for DOUBLE the impact Tomorrow is GivingTuesday, and we are counting on YOU to bring us closer to a cure for cystic fibrosis. Thanks to the Stremick family, donations starting today will be matched, dollar-for-dollar, up to $250,000. You can make twice the impact for all people wi…

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  Mary Dwight, CF Foundation · [email protected]

November 21, 2024 at 12:37 AM

The work ahead: What this election means for CF policy

Our priorities from today on As Washington and state governments prepare for leadership changes in January, the Cystic Fibrosis Foundation remains guided by one principle: ensuring that people with CF have the opportunity to live long, fulfilling lives. We continue to engage and educate polic…

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  Lou & Nancy Stremick, CF Foundation · [email protected]

November 19, 2024 at 4:21 PM

Stand with us this GivingTuesday

Your support is critical as we work to cure CF Dear Friend,   We are Lou and Nancy Stremick, grandparents to Ella, a 19-year-old (adult!) who has cystic fibrosis. Like all grandparents, Ella and all our grandchildren mean the world to us, and we would do absolutely anything for them. With Gi…

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  Cystic Fibrosis Foundation · [email protected]

November 14, 2024 at 9:14 PM

Together: a Community Update

GivingTuesday is just two weeks away! November 14, 2024  Save the Date for GivingTuesday  GivingTuesday is just two weeks away, and we have exciting news! Starting Monday, December 2, your donation will be matched, dollar-for-dollar, up to $250,000 thanks to Lou and Nancy Stremick, whose 19…

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  Cystic Fibrosis Foundation · [email protected]

November 11, 2024 at 4:02 PM

You're invited to our NACFC Q+A

Join us tomorrow! Join our NACFC Live Event! Every year, the North American Cystic Fibrosis Conference brings together thousands of scientists, clinicians, and caregivers from around the world to discuss the latest advances in cystic fibrosis research, drug development, and care. Tomorrow, dur…

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  David Elin - CF Foundation · [email protected]

November 4, 2024 at 2:19 PM

Tomorrow is Election Day

Are you ready to vote? CF Foundation Supporter,    Election Day is tomorrow, November 5! As you prepare to make your voice heard, please take a minute to confirm your plan to vote based on your state’s requirements and processes. CONFIRM YOUR VOTER REGISTRATION Voting is an important way…

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  Cystic Fibrosis Foundation · [email protected]

October 31, 2024 at 8:13 PM

Together: a Community Update

Register for our live NACFC highlights webinar November 12 October 31, 2024  Join our Live NACFC Highlights Event with Q&A Interested in learning about the latest cystic fibrosis research and care highlights from the North American Cystic Fibrosis Conference? Join us live, November 12 a…

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  Cystic Fibrosis Foundation · [email protected]

October 25, 2024 at 1:14 PM

Now live! NACFC 2024 recordings now available

Watch on YouTube NACFC Recordings Now on YouTube Recordings from this year’s North American Cystic Fibrosis Conference are now available on YouTube. Hear CF professionals from across the globe share the latest in cystic fibrosis research, drug development, and care during plenaries, symposia, …

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  Cystic Fibrosis Foundation · [email protected]

October 23, 2024 at 7:16 PM

Research and care update: October edition

Our latest must-read developments October UpdateFeatured This Month: Efforts to improve newborn screening “Bionic Pancreas” study enrollingNew mental health study for children Join Our Live NACFC Highlights Webinar Interested in learning about the latest cystic fibrosis research and care …

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  Cystic Fibrosis Foundation · [email protected]

October 17, 2024 at 8:13 PM

Together: a Community Update

ROSE UP is just 1 week away - Register now! October 17, 2024  ROSE UP to Help Cure CF ROSE UP is celebrating its fifth anniversary, and the big day is one week away! It’s not too late to register, choose an activity, and raise funds to show your support for everyone living with cystic fibro…

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  Cystic Fibrosis Foundation · [email protected]

October 3, 2024 at 8:21 PM

Together: a Community Update

Submit your original artwork for our BreatheCon art contest October 3, 2024  Enter our BreatheCon Art Contest    Adults with cystic fibrosis: Do you want an opportunity to see your artwork featured on our 2025 BreatheCon promotional and event materials? Submit your original artwork for our …

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  Elizabeth Holden, CF Foundation · [email protected]

October 1, 2024 at 5:02 PM

Advocacy in Action: We're on a roll

The impact of your voice   Preparing for the 2024 General Elections The Cystic Fibrosis Foundation believes in empowering our community to advocate for the needs of people with cystic fibrosis. This includes providing nonpartisan tools to help enable the CF community to exercise their right…

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  Cystic Fibrosis Foundation · [email protected]

September 30, 2024 at 7:21 PM

Your NACFC recap is here

Catch up on the highlights At this year’s North American Cystic Fibrosis Conference (NACFC), scientists, clinicians, and caregivers from around the world came together to discuss the latest advances in cystic fibrosis research, drug development, and care. In case you missed them, you can cat…

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  Cystic Fibrosis Foundation · [email protected]

September 25, 2024 at 2:01 PM

NACFC starts tomorrow!

Don't miss out - register today The North American Cystic Fibrosis Conference (NACFC) starts tomorrow! There's still time to join us virtually to hear the latest advances in cystic fibrosis research, drug development, and care.   Register now to join the virtual NACFC platform to watch the …

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  Cystic Fibrosis Foundation · [email protected]

September 19, 2024 at 8:17 PM

Together: a Community Update

Help guide the Foundation's work in the years ahead September 19, 2024  Help Inform the Foundation’s Priorities  To continue accelerating toward our mission to cure cystic fibrosis and provide all people with CF the opportunity to live long, fulfilling lives, the Foundation is developing ou…

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  Mary Dwight - CF Foundation · [email protected]

September 17, 2024 at 11:17 AM

It’s National Voter Registration Day

Resources to help you cast your ballot Dear CF Foundation Supporter,    Today is National Voter Registration Day, the nation's largest nonpartisan civic holiday dedicated to celebrating our democracy, and the CF Foundation is celebrating by encouraging the cystic fibrosis community to registe…

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  Cystic Fibrosis Foundation · [email protected]

September 12, 2024 at 1:06 PM

NACFC is just two weeks away!

Join us online September 26-28 Don't miss out! Just two weeks until the North American Cystic Fibrosis Conference (NACFC) kicks off — save your virtual seat now to join us online September 26-28! RESERVE YOUR SPOT This annual meeting brings together scientists, clinicians, and caregivers…

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  Cystic Fibrosis Foundation · [email protected]

September 5, 2024 at 8:15 PM

Together: a Community Update

ROSE UP is October 24 September 5, 2024  How Will You ROSE UP? ROSE UP, a fundraising event that brings the entire cystic fibrosis community together to get creative and advance the mission of the Foundation, is October 24! You can choose any activity to ROSE UP — whether it’s sports, bakin…

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  Cystic Fibrosis Foundation · [email protected]

August 22, 2024 at 8:17 PM

Together: a Community Update

Register for the North American Cystic Fibrosis Conference (NACFC) August 22, 2024  Virtual Registration Now Open for the North American Cystic Fibrosis Conference (NACFC) Join us online September 26-28 to hear the latest advancements in cystic fibrosis research, drug development, and care …

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  Cystic Fibrosis Foundation · [email protected]

August 15, 2024 at 8:01 PM

NACFC live event registration now open!

Join us online September 26-28 The North American Cystic Fibrosis Conference (NACFC) is back September 26-28!   Save your virtual seat now to hear the latest advances in cystic fibrosis research, drug development, and care during three plenaries, as well as six sessions prioritized and chos…

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  Cystic Fibrosis Foundation · [email protected]

August 14, 2024 at 5:06 PM

Research and care update: August edition

Read our latest developments August UpdateIN THIS EDITION: Golden Ticket winner announcedFDA reviewing new triple-combination modulatorPatient Registry Highlights Report availableNew content on our Spanish website Genetic Therapies Congrats to this year’s Golden Ticket competition winn…

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  Cystic Fibrosis Foundation · [email protected]

August 8, 2024 at 8:19 PM

Together: a Community Update

2024 Golden Ticket Competition winner announced August 8, 2024  2024 Golden Ticket Competition Winner Announced   In this year’s competition to bring the most promising genetic therapy technologies into cystic fibrosis research, the Foundation alongside Bakar Labs at UC Berkeley announced …

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  Amanda Zar, CF Foundation · [email protected]

August 1, 2024 at 1:02 PM

Secure Your Legacy: Make-a-Will Month is here!

It’s never too early to make a plan for the future. Dear CF Foundation Supporter,  No matter your age, it’s never too early to make a plan for the future. An up-to-date estate plan is crucial for managing assets and ensuring that your wishes are honored. It also provides peace of mind, knowin…

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  Cystic Fibrosis Foundation · [email protected]

July 25, 2024 at 8:19 PM

Together: a Community Update

Explore Health Trends in Our 2023 Patient Registry Highlights Handout July 25, 2024  Explore Health Trends in Our 2023 Patient Registry Highlights Handout    Our 2023 Patient Registry Highlights Handout is now available. It includes important data on people with cystic fibrosis in the U.S.…

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  Cystic Fibrosis Foundation · [email protected]

July 11, 2024 at 8:19 PM

Together: a Community Update

During our 16th annual Teen Advocacy Day, more than 70 teens came together July 11, 2024  More Than 70 Teens Gathered for Our 16th Annual Teen Advocacy Day   During our 16th annual Teen Advocacy Day, more than 70 teens came together in-person and online to help ensure lawmakers better unde…

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  Cystic Fibrosis Foundation · [email protected]

June 27, 2024 at 8:22 PM

Together: a Community Update

The median predicted survival according to 2023 Patient Registry data June 27, 2024  Updated Median Predicted Survival for People With CF in the U.S. For people with cystic fibrosis born between 2019-2023, the median predicted survival age is 61, according to 2023 Patient Registry data. W…

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  Mary Dwight - CF Foundation · [email protected]

June 27, 2024 at 1:01 PM

Amplify the voice of the CF community

The time is now. Urge Congress to pass PASTEUR Advocate,   Today, teens from across the country are joining us for our 16th annual Teen Advocacy Day to help ensure lawmakers better understand the needs of people living with cystic fibrosis.   Sharing personal stories about life with CF an…

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  Cystic Fibrosis Foundation · [email protected]

June 26, 2024 at 6:30 PM

Friend, don't miss your chance

Join the 65 Roses Club to help make an impact CF Foundation Supporter,   Our June 5 (6/5) celebration of 65 Roses® Day was a huge success! Our 65 Roses Club grew to nearly 2,800 monthly donors who contribute more than $1.3 million annually. These gifts are a reliable stream of revenue that hel…

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  Cystic Fibrosis Foundation · [email protected]

June 20, 2024 at 3:01 PM

Friend, ready to secure your spot?

🌹 Join our 65 Roses Club today! 🌹 On June 5 (6/5), we celebrated 65 Roses® Day which highlights the 65 Roses story. Since 1965, the term “65 Roses” has been used by children of all ages to describe cystic fibrosis. But, making the disease easier to say doesn’t make living with CF any easier…

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  Cystic Fibrosis Foundation · [email protected]

June 13, 2024 at 8:15 PM

Together: a Community Update

Amplify the Voice of the CF Community June 13, 2024  Amplify the Voice of the CF Community  On Teen Advocacy Day, teens from across the country will share their personal stories with members of Congress to pass the PASTEUR Act, legislation that will incentivize the development of highly i…

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  Cystic Fibrosis Foundation · [email protected]

June 11, 2024 at 1:02 PM

Research and care update: June edition

Read our latest developments June UpdateIN THIS EDITION: Several clinical trials are enrollingNew lung function standards are hereThe results to the Adapting CF Care survey Learn About Cystic Fibrosis Clinical Trials Did you know that people with CF can volunteer for clinical trials regard…

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  Cystic Fibrosis Foundation · [email protected]

June 5, 2024 at 1:21 PM

🌹 It’s 6/5 Day!

Will you join our 65 Roses Club? Today is 65 Roses® Day!   The "65 Roses" story 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." Today, "65 Roses" is a term often used by young children with cystic f…

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  Cystic Fibrosis Foundation · [email protected]

May 30, 2024 at 8:22 PM

Together: a Community Update

Explore our annual report May 30, 2024  Our 2023 Annual Report Is Here  In 2023, the Foundation celebrated continued achievements and milestones toward our mission of curing cystic fibrosis. We funded more than $286 million in research and care, began trials of multiple types of genetic t…

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  Elizabeth Holden, CF Foundation · [email protected]

May 29, 2024 at 3:03 PM

Advocacy in Action: Your impact, your progress

Read our first edition! Newsletter Highlights  March on the HillThe many ways we advocateAction in the statesCongressional Captains Program It’s been a busy year for the cystic fibrosis community with history being made at our largest ever March on the Hill and our first standalone virtual l…

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  Cystic Fibrosis Foundation · [email protected]

May 22, 2024 at 3:36 PM

🌹 65 Roses Day is right around the corner!

We look forward to your participation Are you familiar with 65 Roses® Day?   Every year on June 5 (6/5), we reflect on the “65 Roses” story. It dates back to 1965 when observant 4-year-old, Richard “Ricky” Weiss, hearing the name of his disease for the first time, pronounced cystic fibrosis a…

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  Cystic Fibrosis Foundation · [email protected]

May 16, 2024 at 8:19 PM

Together: a Community Update

Explore the results from our Adapting CF Care survey May 16, 2024  Adapting CF Care Survey Results  Last fall we conducted the Adapting CF Care survey to help inform how the care that people with cystic fibrosis receive could adapt to best meet their needs. The survey results highlighted se…

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  Cystic Fibrosis Foundation · [email protected]

May 2, 2024 at 8:20 PM

Together: a Community Update

Celebrate Cystic Fibrosis Awareness Month May 2, 2024  Celebrate Cystic Fibrosis Awareness Month May is Cystic Fibrosis Awareness Month, a time dedicated to coming together to recognize and honor the CF community. This year, join us as we celebrate the resilient spirit of the CF community. …

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  Cystic Fibrosis Foundation · [email protected]

May 1, 2024 at 3:20 PM

We’re celebrating you this month!

Join the conversation this CF Awareness Month We're glad you're here This year, we celebrate the resilient spirit of the CF community during Cystic Fibrosis Awareness Month.    You can show your support and help raise cystic fibrosis awareness all month long with new custom graphics, includ…

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  Cystic Fibrosis Foundation · [email protected]

April 25, 2024 at 3:07 PM

Save your spot for ResearchCon!

Join us April 30-May 1 Don’t miss your chance to engage with cystic fibrosis clinicians, researchers, and members of the CF community at ResearchCon April 30-May 1.   SAVE YOUR SPOT Our research has come a long way, but we still have much more work to do. Join researchers, clinicians, and…

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  Cystic Fibrosis Foundation · [email protected]

April 23, 2024 at 3:01 PM

Research and care April news

Our latest developments RESEARCH + CARE April UpdateHere are the latest news and developments in cystic fibrosis research and care from the Cystic Fibrosis Foundation: Genetic Therapies Investing in Potential Splicing Mutation Treatment We are investing up to $8.5 million in additional fu…

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  Cystic Fibrosis Foundation · [email protected]

April 18, 2024 at 8:17 PM

Together: a Community Update

Get to know the new Milestones III chairs April 18, 2024  New Chairs of Milestones III Campaign We are pleased to announce that Kate O’Donnell and Amy Barry, long-standing volunteer leaders and supporters of the CF Foundation, will serve as co-chairs of the Milestones III: Driven by a Drea…

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  Cystic Fibrosis Foundation · [email protected]

April 4, 2024 at 8:20 PM

Together: a Community Update

Our latest research funding announcement April 4, 2024  CF Foundation Invests Up to $8.5 Million in SpliSense We are investing up to $8.5 million in additional funds in SpliSense to conduct a Phase 2 clinical trial to test its drug for people with cystic fibrosis who have the splicing muta…

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  Cystic Fibrosis Foundation · [email protected]

April 1, 2024 at 8:06 PM

Do you have questions about CF research and care?

ResearchCon is April 30-May 1 You’re invited! Join the cystic fibrosis community at ResearchCon April 30-May 1.   I'M IN Regardless of your connection to CF, you can discuss the latest in CF-related science, research, clinical care, and lived experience alongside others living with and st…

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