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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  Mary Dwight - CF Foundation · [email protected]

March 25, 2024 at 2:56 PM

👏 Thank you for making a difference

A recap of March on the Hill and Online Day of Action Dear Advocate,    Thank you for raising your voice for everyone with cystic fibrosis!   Nearly 350 advocates and 2,600 community members from across the country took action for people with cystic fibrosis during the Foundation’s 17th ann…

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  Cystic Fibrosis Foundation · [email protected]

March 21, 2024 at 8:16 PM

Together: a Community Update

Our latest research funding announcement March 21, 2024  CF Foundation Invests an Additional $5 Million in BiomX We have invested an additional $5 million in BiomX Inc. to support a Phase 2b clinical trial to test the efficacy of bacteriophage (phage) therapy in treating chronic Pseudomona…

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  Mary Dwight - CF Foundation · [email protected]

March 14, 2024 at 1:01 PM

Take action for everyone with CF

Contact your members of Congress today Dear Advocate,    Today, advocates from across the country are in Washington, D.C. to meet with members of Congress about two important pieces of legislation that can help everyone with cystic fibrosis. We need you to help amplify our impact. ACT NOW…

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  Piper Beatty Welsh · [email protected]

March 11, 2024 at 4:31 PM

Apply now for an Impact Grant!

Impact Grants can help move your vision forward Friend,    Do you have an idea that could support or empower the cystic fibrosis community? Applications are now open for 2024 Impact Grants, and I would like to personally invite you to submit your idea or program that actively works with and …

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  Cystic Fibrosis Foundation · [email protected]

March 7, 2024 at 9:22 PM

Together: a Community Update

Our latest research funding announcement March 7, 2024  CF Foundation Invests More Than $6.6 Million in Additional Funding in Sionna Therapeutics  We have invested more than $6.6 million in additional funding in Sionna Therapeutics to continue research into the development of potential new …

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  Amanda Zar, CF Foundation · [email protected]

March 4, 2024 at 5:52 PM

Join the CF Foundation Legacy Challenge Match today

There's no better time to join our Legacy Society Join the CF Foundation Legacy Challenge Match today! Dear Friend, We understand that giving as a family is a journey and no one knows that more than CF grandmother Bonnee Binker and her family and friends. The Delaney Binker Family Cure Cy…

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  Cystic Fibrosis Foundation · [email protected]

February 28, 2024 at 8:31 PM

How does the cost of CF affect you?

Participate in our survey for the CF community We want to hear from you! The Cystic Fibrosis Foundation welcomes adults with cystic fibrosis and caregivers of people with the disease who are U.S. residents to share how the cost of life with CF affects you or your loved one’s daily life and a…

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  Cystic Fibrosis Foundation · [email protected]

February 26, 2024 at 4:17 PM

Attend an Impact Grants webinar

Join us March 7 Do you have an idea that could support the cystic fibrosis community? Join our webinar March 7 at 3 p.m. ET to learn more about how Impact Grants can make your vision a reality. During the webinar, you will hear CF Foundation staff, Melody Zelenz and Piper Beatty Welsh, share…

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  Cystic Fibrosis Foundation · [email protected]

February 22, 2024 at 9:16 PM

Together: a Community Update

Take our research survey to share how the cost of life with CF affects you February 22, 2024  Share Your Thoughts About the Cost of CF How has the cost of living with cystic fibrosis affected your daily life and access to healthcare services? Adults with CF and caregivers of people with CF w…

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  Cystic Fibrosis Foundation · [email protected]

February 20, 2024 at 6:16 PM

Research and medical February news

Welcome to our bimonthly updates MEDICAL AND RESEARCH February Update Welcome to our first bimonthly medical and research update email, which combines the latest news and developments in cystic fibrosis research and care from the CF Foundation. Genetic Therapies Research Webinar Tomorr…

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  Cystic Fibrosis Foundation · [email protected]

February 14, 2024 at 3:57 PM

💌 Friend, just 1 thing missing from our 65 Roses Club

YOU! Show your love and join today Friend, as a dedicated member of the CF community, we invite you to show your love every month by becoming a member of our 65 Roses Club.   Your consistent commitment can make a difference. While many people with cystic fibrosis are healthier and living long…

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  Cystic Fibrosis Foundation · [email protected]

February 8, 2024 at 9:11 PM

Together: a Community Update

Join our CF research update webinar and live Q+A February 8, 2024  News•Get Involved•CF Community Blog Join Our CF Research Update and Live Q+A Genetic therapies, including RNA therapy and gene therapy, have the potential to work for any person with cystic fibrosis, including people with nons…

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  Mary Dwight, CF Foundation · [email protected]

February 5, 2024 at 8:52 PM

Advocate, thank you for showing up for the CF community

Check out our advocacy highlights from 2023 2023 Advocacy Wins As we start the new year, we want to celebrate the CF community’s strength and resolve in 2023 to advance our search for new therapies and protect access to care and treatments for those living with cystic fibrosis. Together, you he…

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  Cystic Fibrosis Foundation · [email protected]

February 5, 2024 at 3:30 PM

Understanding genetic therapies: New research webinar

Join us February 21 Research Update: Genetic Therapies for CFYou’re invited to join us for a webinar Wednesday February 21 at 7 p.m. ET to learn about genetic therapies in cystic fibrosis. During the webinar, you can also ask your questions during a live audience Q&A session. SAVE MY…

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  Cystic Fibrosis Foundation · [email protected]

January 25, 2024 at 9:09 PM

Together: a Community Update

The latest updates for January 25, 2024 January 25, 2024  ☰✕ News• Get Involved • CF Community Blog CF Foundation Invests Up to $15 Million for Gene Editing Technology  Today, we announced we’re providing up to $15 million to Prime Medicine. Prime Medicine is in the early stages of deve…

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  Mike Boyle, Cystic Fibrosis Foundation · [email protected]

January 18, 2024 at 4:01 PM

A special invitation from our CEO

Register for our National Annual Meeting - Just 1 week away! Dear Friend,  It’s my pleasure to personally invite you to join us online for our 2024 National Annual Meeting, which will be held Thursday, January 25 at 8 p.m. ET/5 p.m. PT. The National Annual Meeting is one of my favorite moment…

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  Cystic Fibrosis Foundation · [email protected]

January 11, 2024 at 9:23 PM

Together: a Community Update

The latest updates for January 11, 2024 January 11, 2024  CF Foundation Invests Up to $5M to Develop a New Anti-Bacterial Therapy   We’re investing up to $5 million in Clarametyx Biosciences to develop a drug that could help address difficult-to-treat bacteria such as chronic Pseudomonas ae…

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  Mike Boyle, Cystic Fibrosis Foundation · [email protected]

January 8, 2024 at 5:18 PM

Honoring the legacy of Joe O’Donnell

The CF Foundation mourns the passing of an incredible leader Dear CF Foundation Community, With a heavy heart, I’m writing to let you know that our dear friend and champion of the CF mission, Joe O’Donnell, died Sunday. Many of you knew or experienced Joe, who was a passionate advocate, a dedi…

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  Cystic Fibrosis Foundation · [email protected]

January 1, 2024 at 2:24 AM

Last chance to give in 2023!

Now is the time to give Friend,    With 2024 just around the corner, we remain laser-focused on our shared dream: a cure for cystic fibrosis.   Our progress has been powered by you. From people with CF living longer than ever before to achieving dreams once thought not possible, we’ve witness…

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  Cystic Fibrosis Foundation · [email protected]

December 31, 2023 at 8:13 PM

Time is running out

Will you help advance our mission in 2024? Friend,    When the Cystic Fibrosis Foundation was founded, children with the disease rarely lived to kindergarten. Today, there are new possibilities for people with CF, and some community members are thriving — going to college, starting careers, a…

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  Cystic Fibrosis Foundation · [email protected]

December 31, 2023 at 1:29 PM

⏰ The clock is ticking ...

You can help us end CF Dear Friend,    In 2023, you helped make incredible progress possible: boldly driving research forward, advancing care, and coming together as a community, all in support of our mission — a life free of cystic fibrosis. Thank you for your unwavering generosity.    But t…

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  Cystic Fibrosis Foundation · [email protected]

December 29, 2023 at 4:20 PM

Working together for a future without CF

A special message from our SVP and Chief Development Officer Dear Friend,   As the holidays approach, I want to express my deepest gratitude for your commitment to advancing our mission and making 2023 a year to celebrate.   Over the past 12 months, we continued to see transformative developme…

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