Pat Feeley - Cystic Fibrosis Foundation · [email protected]

December 30, 2022 at 4:32 PM

Reflecting on our progress in 2022

A special message from Pat Feeley, Chief Development Officer Dear Friend,  Thanks to you, we advanced our mission in 2022 for all people with cystic fibrosis. While I could talk at length about the many accomplishments we achieved together this year, there is perhaps no stronger evidence that y…

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  Cystic Fibrosis Foundation · [email protected]

December 27, 2022 at 4:20 PM

Make your year-end gift now

Accelerate progress for everyone with CF Dear Friend,   We are entering a new era in cystic fibrosis, with life-changing and promising treatments on the horizon. Yet not every person with CF can benefit from available therapies. People like Rose Keller, 22, who reflects on her accomplishments…

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  Cystic Fibrosis Foundation · [email protected]

December 22, 2022 at 9:21 PM

Together: a Community Update

The latest updates for December 22, 2022 Directors From 206 Care Centers Sign On To A Letter Citing Clinical Consequences Of Vertex Decision Recently, 206 care center program directors signed a letter to Vertex explaining that their decision to implement changes to their copay assistance pr…

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  Michael Boyle, MD - Cystic Fibrosis Foundation · [email protected]

December 20, 2022 at 9:20 PM

CF Foundation year in review

A letter from our President and CEO Dear Friend,  As the year draws to a close, the cystic fibrosis community has much to celebrate. Thanks to your unwavering commitment and dedication, in 2022, we continued to make tremendous progress in advancing our mission. Here are just a few of the many a…

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  Cystic Fibrosis Foundation · [email protected]

December 19, 2022 at 4:38 PM

Latest news on modulators, genetic therapies

Read the latest research update CF RESEARCH UPDATE Winter 2022 The Cystic Fibrosis Foundation is excited to share the latest developments in CF research, and there is much to celebrate as we head into the holidays. We continue to focus on advancing new therapies for all people with CF.   …

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  Cystic Fibrosis Foundation · [email protected]

December 14, 2022 at 6:20 PM

You're invited! ✉

Register now to save your virtual spot for our 2023 National Annual Meeting You're invited!   Please join us virtually Thursday, January 26, 2023, at 8 p.m. ET/5 p.m. PT to celebrate the progress we have made in 2022 and hear directly from CF Foundation President and CEO Michael Boyle, MD, as …

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  Cystic Fibrosis Foundation · [email protected]

December 13, 2022 at 10:08 PM

Your gift can help fulfill dreams, such as Maria's

Together, we can make CF stand for Cure Found Dear Friend,   Because of your support, people with cystic fibrosis like Maria Jimenez, 33, are living longer today than ever before. Today, Maria shares just how far we’ve come in a letter to her 10-year-old self. MAKE MY GIFT Maria,   The r…

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  Cystic Fibrosis Foundation · [email protected]

December 12, 2022 at 10:52 PM

Our final infection research update of the year

Read the latest information INFECTION RESEARCH UPDATE Infection research remains a top priority for the Cystic Fibrosis Foundation. As we approach the new year, we are excited to report on all the latest news on studies either funded by the Foundation or facilitated through its clinical tri…

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  David Elin – Cystic Fibrosis Foundation · [email protected]

December 6, 2022 at 6:02 PM

Weeks left to turn passion into action ⚠️

Hold your members of Congress accountable: pass PASTEUR Advocate,    There are only a handful of days left in the Congressional calendar, and with that, we have limited opportunities left to pass the PASTEUR Act.   It’s as simple as this: Because people with cystic fibrosis live with a heighte…

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  David Elin – Cystic Fibrosis Foundation · [email protected]

December 5, 2022 at 5:01 PM

That's a wrap on 2022 🎁

Register now for the final advocacy webinar of the year Hello Advocate,    Join us Wednesday, December 7 at 1:00 p.m. ET, for the last CF advocacy community update of 2022. Learn about what we've accomplished throughout the year, what our year-end push to pass the PASTEUR Act looks like, and …

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  Cystic Fibrosis Foundation · [email protected]

December 5, 2022 at 4:22 PM

We’re answering your questions live!

Have a question following this year’s North American Cystic Fibrosis Conference? We have answers.  Join us tomorrow at 7 p.m. ET/4 p.m. PT to hear key takeaways from the conference and ask CF research experts your top questions during a live question-and-answer session. The event will be mode…

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  Cystic Fibrosis Foundation · [email protected]

December 1, 2022 at 9:23 PM

Together: a Community Update

The latest updates for December 1, 2022 CF Foundation Responds to Vertex Copay Assistance Program The Foundation released a statement strongly urging Vertex to swiftly address its decision to significantly decrease the amount of copay assistance they provide to people with CF, and to ensure…

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  Cystic Fibrosis Foundation · [email protected]

November 30, 2022 at 6:22 PM

There is still time to make a special gift 🎁

Our Giving Tuesday match has been met! Dear Friend,   The strength and support of the CF community continues to amaze us.   We reached our Giving Tuesday goal and thanks to our community and the generosity of the Stremick family, we raised significant funds to continue critical research and i…

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  Cystic Fibrosis Foundation · [email protected]

November 30, 2022 at 1:19 AM

Last chance to give! ⏳

Make your Giving Tuesday donation now Dear Friend,   Because of you, we are making a difference for people with cystic fibrosis. Help us continue to advance our mission by making a gift to the CF Foundation this Giving Tuesday. GIVE NOW Time is running out.   Friend, it's because of yo…

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  Cystic Fibrosis Foundation · [email protected]

November 29, 2022 at 7:25 PM

Time is running out!

Double your gift before the match is gone Dear Friend,   Thanks to the Stremick family, your Giving Tuesday gift will be matched dollar-for-dollar, up to $250,000, in honor of their granddaughter, Ella, and everyone living with cystic fibrosis, like Megan. DOUBLE MY GIFT Megan Moore w…

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  Cystic Fibrosis Foundation · [email protected]

November 29, 2022 at 1:20 PM

Match your Giving Tuesday gift now

Dear Friend,   Because of you, people with cystic fibrosis are living longer.   Because of you, we have more hope for the future than ever before.   But our fight isn’t finished. We still lose precious lives to CF every day.   When you make your Giving Tuesday gift today, your donation will b…

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  Cystic Fibrosis Foundation · [email protected]

November 28, 2022 at 10:04 PM

Your gift goes further and faster on Giving Tuesday

Dear Friend,   Because of you, we have seen tremendous scientific advancements, and we are driving cutting-edge research forward. Yet, we still lose precious lives to CF every day.   You have an opportunity in your lifetime to be part of ending this disease. GIVE NOW Beginning at midnight …

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  Cystic Fibrosis Foundation · [email protected]

November 21, 2022 at 11:21 PM

NACFC 2022 recordings now available

Watch on YouTube This year’s North American Cystic Fibrosis Conference is now available on demand!    The recordings — including the plenaries, symposia, many discipline groups, and lunch and learns — are available on YouTube so you can watch whenever and wherever you want to.  WATCH NOW…

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  Cystic Fibrosis Foundation · [email protected]

November 10, 2022 at 9:30 PM

Together: a Community Update

The latest updates for November 10, 2022 Study Shows Potential to Reduce Medication Burden for People With CF Taking Trikafta Results from the six-week Simplify study found that people with cystic fibrosis enrolled in the study who had good lung function could safely stop taking one of two …

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  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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