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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  Cystic Fibrosis Foundation · [email protected]

March 26, 2025 at 2:31 PM

Infection Research Spotlight

Read the latest news on detection, phage research March Update Research into infections continues to be a top priority for the Cystic Fibrosis Foundation. Chronic infections and drug-resistant bacteria remain key challenges — even for those who take modulators, such as Trikafta.   Research In…

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  Cystic Fibrosis Foundation · [email protected]

March 20, 2025 at 8:20 PM

Together: a Community Update

Get to know our new National Volunteer Advocacy Committee co-chairs March 20, 2025  Meet Our New National Volunteer Advocacy Committee Co-Chairs    Kirk Astroth, an adult with cystic fibrosis, and Brittney Householder, a godmother to a teen with CF, will lead our volunteer advocacy effort…

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  Cystic Fibrosis Foundation · [email protected]

March 18, 2025 at 10:55 AM

Register now for our genetic therapy research webinar

Just 2 days out! This Thursday, March 20     CF Foundation Supporter, genetic therapies, including RNA therapy and gene therapy, could potentially work for every person with cystic fibrosis — even those who can't benefit from CFTR modulators.   Join us this Thursday, March 20 at 7 p.m. ET…

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  Cystic Fibrosis Foundation · [email protected]

March 6, 2025 at 9:20 PM

Together: a Community Update

Register for our upcoming research webinar March 6, 2025  Ask Your Questions About Genetic Therapy Research Genetic therapies, including RNA therapy and gene therapy, could potentially work for any person with cystic fibrosis, including people with nonsense and rare mutations. If you have…

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  Cystic Fibrosis Foundation · [email protected]

February 27, 2025 at 4:40 PM

Bring your idea to life — join our Impact Grants webinar!

Learn how to secure up to $10,00 for your CF-focused program Have an idea that could empower people with cystic fibrosis or their families? Join us for an informational webinar March 13 at 3 p.m. EST to learn more about the Impact Grants application process. During this webinar, CF Foundat…

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  Cystic Fibrosis Foundation · [email protected]

February 20, 2025 at 9:11 PM

Together: a Community Update

Read our response to NIH funding cuts February 20, 2025  CF Foundation Responds to NIH Funding Cuts  We oppose the decision by the National Institutes of Health (NIH) to cut the reimbursement rate for indirect costs — funding that covers expenses such as equipment and lab space. The rapid…

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  Mary Dwight - CF Foundation · [email protected]

February 20, 2025 at 11:56 AM

Advocate, we need your voice now

Tell Congress to protect programs that support people with CF Advocate,   Today, volunteers from across the country are participating in the 18th annual March on the Hill to deliver a timely message: we need Congress to protect the National Institutes of Health (NIH), the U.S. Food and Drug…

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  Cystic Fibrosis Foundation · [email protected]

February 14, 2025 at 2:16 PM

Show your love every month – join the 65 Roses Club

💕 Your support makes our hearts full 💕 Friend, as a dedicated member of the cystic fibrosis community, we invite you to become part of something special.   The 65 Roses® Club is a group of individuals who are committed to making an impact for people with CF through monthly giving.   As a mon…

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  Cystic Fibrosis Foundation · [email protected]

February 12, 2025 at 9:11 PM

Research and care update: January/February edition

Our latest must-read developments January/February UpdateHighlights New modulator Alyftrek approved Study results on Trikafta and GI symptomsFunding for research into lung transplant complication CF Foundation Responds to NIH Funding Cuts The CF Foundation is opposed to the recent deci…

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  Cystic Fibrosis Foundation · [email protected]

February 6, 2025 at 9:18 PM

Together: a Community Update

Take our brief survey to share your insights February 6, 2025  Share Your Insights on Digestive System Issues and Aging With Cystic Fibrosis   As the CF Foundation continues work to support its next strategic plan, we have identified two areas of community concern to further explore: digest…

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  Cystic Fibrosis Foundation · [email protected]

January 23, 2025 at 9:12 PM

Together: a Community Update

BreatheCon is February 7-8! January 23, 2025  Register for BreatheCon 2025   Whether you were diagnosed with cystic fibrosis at birth or recently received a diagnosis, there’s a spot for you at BreatheCon! This two-day virtual experience offers opportunities to share stories and perspective…

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  Cystic Fibrosis Foundation · [email protected]

January 21, 2025 at 4:29 PM

Our National Annual Meeting is tomorrow night

Don't miss your chance to register!   You're invited to the Cystic Fibrosis Foundation’s National Annual Meeting Wednesday, January 22, 2025 8 p.m. ET / 5 p.m. PT  LEARN HOW WE'RE SHAPING THE FUTURE Time is running out to secure your spot for this vital conversation with Foundation lead…

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  David Elin - CF Foundation · [email protected]

January 10, 2025 at 2:02 PM

Stay informed: Join us for an advocacy community update

A look at what's ahead for CF advocacy in 2025 Hello Advocate,    You’re invited to join us Tuesday, January 14 at 2 p.m. EST for a CF advocacy community update. We are excited to share our 2025 advocacy priorities including how we plan to work with the 119th Congress and engage with CF adv…

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  Cystic Fibrosis Foundation · [email protected]

January 9, 2025 at 9:18 PM

Together: a Community Update

The FDA has approved a new triple-combination modulator January 9, 2025  FDA Approves New, Once-a-Day CFTR Modulator for People With Cystic Fibrosis  The FDA has approved a new triple-combination modulator, Alyftrek, for people with cystic fibrosis ages 6 years and older who have a mutation…

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  Cystic Fibrosis Foundation · [email protected]

January 7, 2025 at 4:36 PM

Don't miss Q&A with CF Foundation leaders!

Save your spot now for our National Annual Meeting You are invited to the Cystic Fibrosis Foundation’s National Annual Meeting Wednesday, January 22, 2025 8 p.m. ET / 5 p.m. PT  REGISTER NOW!   President and CEO Michael Boyle, MD, and Executive Vice President and Chief Operating and Finan…

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  Cystic Fibrosis Foundation · [email protected]

January 1, 2025 at 2:16 AM

This is your final chance to give in 2024

Don’t miss your opportunity to give. Let’s cure cystic fibrosis Time is nearly up. Can you help us make investments in the most promising CF science toward a cure for all people with cystic fibrosis? COUNT ME IN Every day without a cure is one day too many for people who live with this d…

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  Cystic Fibrosis Foundation · [email protected]

December 31, 2024 at 8:16 PM

Time is running out

Don’t wait — your support is critical in the fight against CF CF Foundation Supporter, every person with cystic fibrosis has a unique journey. While we’ve made significant advances with more therapies than ever before, people with CF need more breakthroughs and ultimately, a cure.   Don't mis…

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  Cystic Fibrosis Foundation · [email protected]

December 31, 2024 at 1:17 PM

Every day without a cure is one too many

Help drive critical research forward — make your gift today As the year ends, we reflect on the progress we’ve achieved together, while recognizing how much more we need to do. Your support is needed today to help cure cystic fibrosis.   Every day without a cure is one day too many for peop…

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  Cystic Fibrosis Foundation · [email protected]

December 30, 2024 at 4:25 PM

Working together for a future without CF

A special message from our Senior VP and Chief Development Officer Dear CF Foundation Supporter,   Reflecting on the past year, I am struck by how much we have achieved together for people living with cystic fibrosis in advancing our pursuit of a cure, excellent care, and community connection…

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  Cystic Fibrosis Foundation · [email protected]

December 27, 2024 at 4:10 PM

CF doesn’t wait. Neither can Emilee.

Your support is vital for our success Emilee Pehrson, a 44-year-old with cystic fibrosis, was first hospitalized when she was 15.   “At the time, it felt like the beginning of the end,” she said. “It meant no matter if I did everything perfectly, CF was still going to affect my life.” MAKE…

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  Mike Boyle, Cystic Fibrosis Foundation · [email protected]

December 26, 2024 at 8:59 PM

Hallmarks of excellence in 2024

A message from our President and Chief Executive Officer Dear Friend,   This year, we continued to transform all areas of our work to help people with cystic fibrosis. Here are some exciting highlights that community members like you made possible. I could not be more grateful, and I hope you…

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  Cystic Fibrosis Foundation · [email protected]

December 19, 2024 at 4:15 PM

Join us for our National Annual Meeting!

Don’t miss this opportunity to ask CF Foundation leadership your questions You are invited to the Cystic Fibrosis Foundation’s 2025 National Annual Meeting  Wednesday, January 22 at 8 p.m. ET/5 p.m. PT  RESERVE YOUR SPOT TODAY Join us for an inspiring conversation with Michael Boyle, MD, P…

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  Cystic Fibrosis Foundation · [email protected]

December 18, 2024 at 6:06 PM

Research and care update: December edition

Our latest must-read developments December UpdateFeatured This Month: New funding for potential gene editing therapy  Anti-infective enters Phase 2 trial New daily care check-in tool  Foundation Funds Development of Gene Editing Therapy  We have agreed to invest up to $15 million in ReCod…

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  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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