Cystic Fibrosis Foundation · [email protected]

November 7, 2022 at 9:25 PM

Your NACFC recap is here

Get caught up via YouTube and the CF Community Blog That’s a wrap on this year’s North American Cystic Fibrosis Conference! In case you missed it, we’re here to help get you up to speed on the highlights from this year’s conference.     Plenary 1: Hope for All: Addressing the Needs of Those Wi…

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  Mary Dwight – Cystic Fibrosis Foundation · [email protected]

November 7, 2022 at 3:30 PM

Election Day is Tomorrow

Are you ready? Advocate,    Tomorrow is Election Day. As you prepare to make your voice heard, please remember to make a plan to vote based on your state's guidelines and processes, including options and deadlines to consider.   Before you cast your ballot, you can learn about how you can asse…

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  Cystic Fibrosis Foundation · [email protected]

November 3, 2022 at 3:48 PM

Watch NACFC live

The North American Cystic Fibrosis Conference (NACFC) starts today!     Join us live and log in to the virtual NACFC platform to watch three plenaries and six sessions selected by members of the CF Foundation’s Adult Advisory Council for free.  WATCH NACFC NOW Thursday, November 3 at 2 p.m.…

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  Cystic Fibrosis Foundation · [email protected]

October 27, 2022 at 8:23 PM

Together: a Community Update

The latest updates for October 27, 2022 Vertex Makes Changes to Copay Assistance Program Vertex announced changes to their copay assistance program for 2023. This is especially important to keep in mind as you consider your coverage options during open enrollment. Visit our guide to learn w…

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  Cystic Fibrosis Foundation · [email protected]

October 13, 2022 at 8:27 PM

Together: a Community Update

The latest updates for October 13, 2022 The Latest in CF Research Today, we announced our investment of up to $5 million in Carmine Therapeutics to continue lab research of a method to deliver a potential gene therapy to people with cystic fibrosis that would temporarily eliminate the symp…

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  Cystic Fibrosis Foundation · [email protected]

September 29, 2022 at 8:33 PM

Together: a Community Update

The latest updates for September 29, 2022 CF Foundation Provides Updates on Newborn Screening Initiative  During Newborn Screening Awareness Month, we continue to assess how cystic fibrosis newborn screening is conducted across the U.S. and what opportunities there are to ensure that every i…

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  Cystic Fibrosis Foundation · [email protected]

September 26, 2022 at 3:27 PM

NACFC 2022 is coming soon

Hear the latest advances in cystic fibrosis research, care, and drug development at the North American Cystic Fibrosis Conference (NACFC), November 3-5. REGISTER NOW Community members can register for free, live access to all three plenary sessions and six additional sessions selected by me…

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  Cystic Fibrosis Foundation · [email protected]

September 21, 2022 at 3:23 PM

You’re invited!

Save your seat for CF FamilyCon Registration for CF FamilyCon is now open!    People with cystic fibrosis and all who love someone with CF (attendees must be age 16 and older) are invited to join CF FamilyCon, a free, two-day virtual event, on October 21 and 22. Join small-group discussions, s…

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  Mary Dwight – Cystic Fibrosis Foundation · [email protected]

September 20, 2022 at 3:30 PM

Exercising your right to vote is important to your advocacy journey

Resources to help you cast your ballot Hello Advocate,    Exercising your right to vote is an important way to advocate for people with cystic fibrosis. There are some easy steps to make a voting plan this election:    Make sure you are registered to vote.  Learn your state’s processes and dead…

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  Cystic Fibrosis Foundation · [email protected]

September 15, 2022 at 8:24 PM

Together: a Community Update

The latest updates for September 15, 2022 One Week Until ROSE UP! ROSE UP, a virtual fundraising event created and led by adults with cystic fibrosis is one week away! Register today to earn great rewards and help raise funds and awareness through creative, meaningful acts. Thanks to an anony…

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  Cystic Fibrosis Foundation · [email protected]

September 1, 2022 at 8:27 PM

Together: a Community Update

The latest updates for September 1, 2022 CF Foundation Joins Coalition to Advance Diversity and Inclusion in the Workplace As part of our commitment to advance equity, racial justice, diversity, and inclusion, we pledge, along with more than 2,300 signatories, to take action to cultivate a w…

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  Cystic Fibrosis Foundation · [email protected]

August 24, 2022 at 8:02 PM

Your support fuels our progress

Register to ROSE UP! This September will mark six and a half years since Lauren Guidry received a life-saving double-lung transplant. To recognize this milestone, Lauren is celebrating by participating in ROSE UP! REGISTER FOR ROSE UP “When I was diagnosed with cystic fibrosis, the future …

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  Cystic Fibrosis Foundation · [email protected]

August 18, 2022 at 8:24 PM

Together: a Community Update

The latest updates for August 18, 2022 Journal of Cystic Fibrosis Spotlights the Evolving Cystic Fibrosis Care Model  People with cystic fibrosis are living longer, healthier lives because of highly specialized care and treatments available today, including Trikafta. The Journal of Cystic Fi…

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  Cystic Fibrosis Foundation · [email protected]

August 4, 2022 at 8:32 PM

Together: a Community Update

The latest updates for August 4, 2022 CF Foundation Estimates Increase in Cystic Fibrosis Population  Last week, we announced that the population of people with cystic fibrosis has increased over the past decade. Today, there are nearly 40,000 people with CF in the U.S., and an estimated 105…

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  Cystic Fibrosis Foundation · [email protected]

August 3, 2022 at 3:41 PM

ROSE UP match announcement

Registration is open for ROSE UP 2022! No matter your connection to cystic fibrosis – whether you are a person with CF, a parent, spouse, sibling, friend, or colleague – we invite you to participate in this fun, virtual fundraising event that brings the CF community together. REGISTER FOR…

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  Cystic Fibrosis Foundation · [email protected]

July 28, 2022 at 6:48 PM

Path to a Cure research update

Latest Progress in the Path to a Cure Learn more about recent news to develop therapies for all people with CF. The Cystic Fibrosis Foundation continues to make progress in its $500 million Path to a Cure initiative to accelerate treatments for the underlying cause of cys…

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  Cystic Fibrosis Foundation · [email protected]

July 21, 2022 at 8:25 PM

Together: a Community Update

The latest updates for July 21, 2022 Meet the Winners of Our Golden Ticket Competition Yesterday, we announced the winners of our first-ever Golden Ticket Competition. The winners were awarded free lab and office space at University of California, Berkeley’s Bakar BioEnginuity Hub, where the…

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  Cystic Fibrosis Foundation · [email protected]

July 12, 2022 at 8:05 PM

A legacy challenge to fulfill dreams of tomorrow

Leave a gift that costs you nothing to today Dear Friend,   Working alongside the community, the Cystic Fibrosis Foundation has made unparalleled advances in treatment and care. You can help make a lasting impact on our future by joining the Legacy Society today.   This year, the Delaney Binker …

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  Cystic Fibrosis Foundation · [email protected]

July 7, 2022 at 8:30 PM

Together: a Community Update

The latest information for July 7, 2022 We Want to Hear From You If you have cystic fibrosis and are over the age of 18 or you are the parent of a child with CF, we want to hear about your or your child’s health-related needs and quality of life. We are conducting a study to better understand…

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  Cystic Fibrosis Foundation · [email protected]

June 23, 2022 at 8:32 PM

Together: a Community Update

The latest information for June 23, 2022 The Latest in Cystic Fibrosis Research We invested $6 million in Carbon Biosciences to support their preclinical research into an innovative gene therapy approach for cystic fibrosis that has the potential to provide a treatment for all people living…

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  Cystic Fibrosis Foundation · [email protected]

June 21, 2022 at 7:06 PM

Infection research update

The latest on our progress to fight infections INFECTION RESEARCH UPDATE Our Infection Research Initiative hit a significant milestone recently as we surpassed our $100 million goal in funding important infection research. As part of our ongoing commitment to fighting infections, we have no…

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  David Elin - Cystic Fibrosis Foundation · [email protected]

June 13, 2022 at 3:02 PM

Keep up the momentum

Time is running out to pass PASTEUR Dear Advocate,   You’ve sent thousands of messages, met with your members of Congress at home and online, shared your experiences with infection, and in turn, cast a spotlight on the urgent need for new, effective antibiotics for people with cystic fibrosis …

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  Cystic Fibrosis Foundation · [email protected]

June 5, 2022 at 4:27 PM

It's 65 Roses Day! 🌹

Join our 65 Roses Club Happy 65 Roses Day!   Today we tell the 65 Roses story and celebrate the resiliency, determination, and heart of the cystic fibrosis community.   From adding more breaths, birthdays, and hope to the lives of people living with CF, there are countless reasons to give. Thi…

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  Cystic Fibrosis Foundation · [email protected]

June 2, 2022 at 8:22 PM

Together: a Community Update

The latest information for June 2, 2022 Our Commitment to Equity, Racial Justice, Diversity, and Inclusion   Over the past two years, we have worked to better understand the needs and barriers that exist for people of color with cystic fibrosis, their families, and the broader community root…

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  Cystic Fibrosis Foundation · [email protected]

June 1, 2022 at 3:03 PM

Add to our 65 Roses bouquet

Each rose is a reason to give Just as each individual rose comes together to form a beautiful bouquet, each monthly gift contributes to help make CF stand for Cure Found.   On June 5 – 65 Roses Day – we tell the 65 Roses story and celebrate the resiliency, determination, and heart the CF communi…

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  Cystic Fibrosis Foundation · [email protected]

May 19, 2022 at 7:57 PM

Together: a Community Update

The latest information for May 19, 2022 Tell Congress: Pass the PASTEUR Act Antibiotic-resistant infections are one of the biggest threats facing people with cystic fibrosis. The Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act would tackle this issue direct…

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  David Elin, Cystic Fibrosis Foundation · [email protected]

May 12, 2022 at 3:02 PM

Advocate, tell Congress: Pass PASTEUR

Your action takes just a minute to complete Hello Advocate,   Right now, Congress has an opportunity to address one of the biggest threats facing people living with cystic fibrosis: the risk of antibiotic-resistant infections. Each year, more than 2.8 million antibiotic-resistant infections…

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  Cystic Fibrosis Foundation · [email protected]

May 5, 2022 at 8:02 PM

Together: a Community Update

The latest information for May 5, 2022 May is Cystic Fibrosis Awareness Month Every May, we celebrate the cystic fibrosis community and its supporters during CF Awareness Month. We encourage you to get involved by sharing your unique experiences on social media with #CFAwarenessMonth, or b…

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  David Elin – Cystic Fibrosis Foundation · [email protected]

April 25, 2022 at 3:02 PM

CF advocacy: April 2022 update

Join us for a community update! Hello Advocate, On Wednesday, April 27 at 1 p.m. ET, the Cystic Fibrosis Foundation, alongside leaders from the CF community, will provide an update on our recent advocacy efforts. Hear the latest information on our…

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  Cystic Fibrosis Foundation · [email protected]

April 21, 2022 at 8:22 PM

Together: a Community Update

The latest information for April 21, 2022 CF Foundation Invests $5 Million for Development of New CFTR Modulators This week, the Foundation announced our investment of $5 million in Sionna Therapeutics to develop new cystic fibrosis transmembrane conductance regulator (CFTR) modulators. If s…

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  Cystic Fibrosis Foundation · [email protected]

April 18, 2022 at 5:22 PM

You drive us towards a cure

Happy National Volunteer Week During National Volunteer Week, we recognize all our supporters – from people living with cystic fibrosis and their family and friends, to care team members and researchers. You make a difference by advocating, researc…

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  Cystic Fibrosis Foundation · [email protected]

April 7, 2022 at 8:30 PM

Together: a Community Update

The latest information for April 7, 2022 Thursday, April 7, 2022   The Latest in CF Research Last week we awarded up to $15.9 million to Eloxx Pharmaceuticals Inc. in additional funding to support the expansion of its ongoing clinical program focused on developing therapies for people …

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  Cystic Fibrosis Foundation · [email protected]

April 5, 2022 at 5:18 PM

There's still time to register for ResearchCon

See you on April 7 and 9? Research is more than data. Every person and story matters in CF research.  Join us April 7 and 9 for ResearchCon: a free, online event where CF community members will share their research stories. Researchers and clinicia…

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  Cystic Fibrosis Foundation · [email protected]

March 24, 2022 at 8:25 PM

Together: a Community Update

The latest information for March 24, 2022 Thursday, March 24, 2022 The Global Burden of Antimicrobial Resistance (AMR) Mary Dwight, senior vice president and chief policy and advocacy officer at the Fo…

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  Mary Dwight, Cystic Fibrosis Foundation · [email protected]

March 21, 2022 at 6:56 PM

Thank you 👏

Your voice made a difference Last week, more than 160 advocates, including more people living with cystic fibrosis than ever before, raised their collective voices to advocate for the CF community during the Foundation's 15th annual March on the Hi…

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  Cystic Fibrosis Foundation · [email protected]

March 17, 2022 at 7:23 PM

Mark your calendar 📅

Join us at ResearchCon Mark your calendar for April 7 and 9 for ResearchCon! Join us for this free, online event open to anyone 16 and older with a personal or professional connection to cystic fibrosis. You’ll have the chance to engage live with e…

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  Mary Dwight, Cystic Fibrosis Foundation · [email protected]

March 15, 2022 at 5:02 PM

Tell Congress to champion the PASTEUR Act

Join our Online Day of Action Did you know? Antibiotic-resistant infections were a leading cause of death worldwide in 2019 – causing more deaths than HIV/AIDS and malaria. While every person is susceptible to infections, people with cystic fibrosi…

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  Cystic Fibrosis Foundation · [email protected]

March 10, 2022 at 9:33 PM

Together: a Community Update

The latest information for March 10, 2022 Thursday, March 10, 2022 The Latest in CF Research The Foundation continues to fund research into phage therapy, the use of specialized viruses that…

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  Cystic Fibrosis Foundation · [email protected]

February 24, 2022 at 9:24 PM

Together: a Community Update

The latest information for February 24, 2022 Thursday, February 24, 2022 Take a CF Community Survey We are seeking community input: How is the Foundation doing in partnering with and supporting the CF com…

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  Cam McLoud · [email protected]

February 22, 2022 at 2:18 PM

Exciting news from the CF Foundation Board of Trustees

KC White elected next Board Chair Friend, After careful planning, I will be stepping down as Chair of the CF Foundation’s Board of Trustees in May of this year. It has been an honor and a privilege to serve this community and work closely with such a talented and passion…

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  Cystic Fibrosis Foundation · [email protected]

February 14, 2022 at 4:15 PM

Show your love this Valentine's Day

The sweetest gift for your loved ones with CF 💜 Give something extra sweet this Valentine's Day. Become a monthly donor to join the 65 Roses Club. Your love and commitment every month will accelerate ongoing research, support programs to help the CF c…

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  Cystic Fibrosis Foundation · [email protected]

February 10, 2022 at 9:18 PM

Together: a Community Update

The latest information for February 10, 2022 Thursday, February 10, 2022 Join Us for NextBreath People with cystic fibrosis, their family members, and caregivers age 16 and older are invited to join us Fe…

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  Cystic Fibrosis Foundation · [email protected]

February 3, 2022 at 9:25 PM

Together: a Community Update

The latest information for February 3, 2022 Thursday, February 3, 2022 CF Foundation Exceeds Initial $100M Infection Research Initiative Funding We have surpassed $100 million in research funding through …

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  David Elin - Cystic Fibrosis Foundation · [email protected]

January 31, 2022 at 7:03 PM

Advocacy in 2022

Register for a community update Friend –  Join us Wednesday, February 2 at 1 p.m. ET for a CF advocacy community update! We are excited to share with you our 2022 advocacy priorities, including how we plan to build support for the PASTEUR Act and i…

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  Cystic Fibrosis Foundation · [email protected]

January 27, 2022 at 9:16 PM

Together: a Community Update

The latest information for January 27, 2022 Thursday, January 27, 2022 Steven Rowe, MD, Announced as Chief Scientific Officer Yesterday, we announced Steven Rowe, MD, will be the Foundation's n…

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  Cystic Fibrosis Foundation · [email protected]

January 19, 2022 at 6:16 PM

Save your seat at the National Annual Meeting

It's not too late to register Let's kick off 2022 together! You are invited to join us at our second virtual National Annual Meeting on Thursday, January 27 at 8 p.m. ET. Celebrate the progress made in 2021 with cystic fibrosis community members and hear Dr. Bo…

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  Cystic Fibrosis Foundation · [email protected]

January 13, 2022 at 9:20 PM

Together: a Community Update

The latest information for January 13, 2022 Thursday, January 13, 2022 You're Invited to our National Annual Meeting We all dream of the day when CF stands for Cure Found. Join us Thursday, …

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  Cystic Fibrosis Foundation · [email protected]

December 31, 2021 at 11:20 PM

Last chance to give in 2021

Make your gift before midnight! Dear Friend,  Hurry – time is running out! Today is your last chance to make your charitable gift to the Cystic Fibrosis Foundation in 2021. Our most important and challenging work is …

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  Cystic Fibrosis Foundation · [email protected]

December 31, 2021 at 1:57 PM

Time is almost up

Hours left to make your 2021 gift Dear Friend,  Our dream is that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. Despite the challenges of the last year, we have continued in relentless pursuit of that…

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  Cystic Fibrosis Foundation · [email protected]

December 30, 2021 at 5:22 PM

Reflecting on our progress in 2021

Thank you for your dedication to our mission Dear Friend, As 2021 draws to a close, I want to thank you for your ongoing dedication to our mission. Together, we continue to achieve so much, even in year two of a global pandemic. Over the past year, we made mor…

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