Cystic Fibrosis Foundation · [email protected]

December 1, 2023 at 4:51 PM

Together: a Community Update

The latest updates for December 1, 2023 December 1, 2023  Join our CF Research News Update and Live Q+A Have a question following this year’s North American Cystic Fibrosis Conference? You’re invited to join us live, December 5 at 7 p.m. ET, to hear key takeaways from this year’s conference…

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  Cystic Fibrosis Foundation · [email protected]

November 29, 2023 at 5:22 PM

GivingTuesday has ended, but our work has not

There’s still time to donate Dear Friend,   The strength and support of the CF 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 research and improve the l…

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  Cystic Fibrosis Foundation · [email protected]

November 29, 2023 at 1:27 AM

⏰ Time is running out on GivingTuesday

Make your donation before midnight! GivingTuesday ends at midnight! Just a few hours remain to make a gift on one of the most important giving days of the year. GIVE NOW Before the clock runs out, make a gift so that we can invest our resources today, while raising funds for tomorrow. Help…

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  Cystic Fibrosis Foundation · [email protected]

November 28, 2023 at 7:26 PM

Help us unlock our GivingTuesday match

There’s still time to make a difference today! We still need your help to unlock our GivingTuesday match! UNLOCK THE MATCH Thanks to the generosity of Lou and Nancy Stremick, donate now and your gift will be matched, dollar-for-dollar, up to $250,000, in honor of their 18-year-old granddau…

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  Cystic Fibrosis Foundation · [email protected]

November 28, 2023 at 1:38 PM

🎁 It’s GivingTuesday – Double your impact

Giving back only takes a few seconds It's GivingTuesday!   Now is the time. Give today for a future without cystic fibrosis and your gift will be matched, dollar-for-dollar, up to $250,000, thanks to the generosity of Lou and Nancy Stremick, whose 18-year-old granddaughter, Ella, has cystic fi…

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  Cystic Fibrosis Foundation · [email protected]

November 27, 2023 at 4:41 PM

Tomorrow is GivingTuesday!

There has never been a better time to give Tomorrow is GivingTuesday — a global day of giving where people all over the world come together to support nonprofits. Now is the time to give to the CF Foundation to build a future without cystic fibrosis. NOW IS THE TIME TO GIVE On GivingTuesd…

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  Cystic Fibrosis Foundation · [email protected]

November 20, 2023 at 2:40 PM

NACFC recordings now on YouTube

Plus - register for the NACFC highlights webinar Recordings from this year’s North American Cystic Fibrosis Conference (NACFC) are now available on demand. Hear CF professionals from across the globe share the latest in cystic fibrosis research, care, and drug development during plenaries, …

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  Cystic Fibrosis Foundation · [email protected]

November 16, 2023 at 9:23 PM

Together: a Community Update

The latest updates for November 16, 2023 November 16, 2023  CF Foundation Invests in Novel Genetic Therapy Delivery Mechanism  As part of our Path to a Cure research initiative to accelerate treatments for all people with cystic fibrosis, we’re investing up to $3 million in ViaNautis, which …

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  Cystic Fibrosis Foundation · [email protected]

November 14, 2023 at 9:14 PM

We're TWO excited to keep this secret!

Save the date for GivingTuesday Dear Friend,   GivingTuesday is just two weeks away, and we have some exciting news to share!   This GivingTuesday, your gift will be matched, dollar-for-dollar, up to $250,000, thanks to the generosity of Lou and Nancy Stremick, whose 18-year-old granddaughter,…

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  Cystic Fibrosis Foundation · [email protected]

November 8, 2023 at 4:10 PM

Highlights from NACFC 2023 - Now available!

Plus, take the Adapting CF Care survey At this year’s North American Cystic Fibrosis Conference (NACFC), scientists and clinicians gathered to discuss and share ideas on the latest in cystic fibrosis research, care, and drug development. In case you missed it, catch up on the highlights now. …

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  Cystic Fibrosis Foundation · [email protected]

October 31, 2023 at 12:13 AM

NACFC starts Thursday, November 2

There's still time to register! The North American Cystic Fibrosis Conference (NACFC) starts Thursday, November 2 — there's still time to register for the virtual experience! REGISTER NOW NACFC is the conference to attend to hear the latest advances in cystic fibrosis research, drug dev…

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  Cystic Fibrosis Foundation · [email protected]

October 19, 2023 at 8:17 PM

Together: a Community Update

The latest updates for October 16, 2023 October 19, 2023  Need Help Navigating Open Enrollment?   Selecting the health insurance plan that’s best for you and your family can be time-consuming and confusing. Let our team of dedicated Compass case managers help break it down for you. Case mana…

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  Cystic Fibrosis Foundation · [email protected]

October 5, 2023 at 8:19 PM

Together: a Community Update

The latest updates for October 5, 2023 October 5, 2023  CF Foundation Invests Up to $9M in Additional Funds to Develop a Messenger RNA Therapy We are investing up to $9 million in additional funds in Arcturus Therapeutics to test an inhaled messenger RNA therapy that could treat the underlyin…

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  Cystic Fibrosis Foundation · [email protected]

September 21, 2023 at 8:18 PM

Together: a Community Update

The latest updates for September 21, 2023 September 21, 2023  Virtual Registration Now Open for the North American Cystic Fibrosis Conference (NACFC) Join us online November 2-4 to hear the latest advances in CF research, drug development, and care at NACFC. Registrants can tune in live to w…

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  Cystic Fibrosis Foundation · [email protected]

September 14, 2023 at 12:48 AM

Register now for NACFC

Join us online November 2-4 The North American Cystic Fibrosis Conference (NACFC) is back November 2-4!   Register to attend the NACFC virtual experience and hear the latest advances in cystic fibrosis research, drug development, and care during three plenaries, as well as six sessions carefu…

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  David Elin - CF Foundation · [email protected]

September 12, 2023 at 12:02 PM

It's time to pass the PASTEUR Act

Congress needs to hear from you! Dear Advocate,    Congress is back in session, and we want to make sure their top priority is to pass the PASTEUR Act to bring new antibiotics to the marketplace for people with CF. TAKE ACTION Today, the CF Foundation helped bring together a diverse gro…

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  Cystic Fibrosis Foundation · [email protected]

September 7, 2023 at 8:06 PM

Together: a Community Update

The latest updates for September 7, 2023 September 7, 2023  How Will You ROSE UP? There are just two weeks left until ROSE UP day! ROSE UP participants are encouraged to choose their favorite activity — whether that’s cooking, dancing, gardening, kickboxing, or something else — to raise fund…

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  David Elin - CF Foundation · [email protected]

September 6, 2023 at 3:01 PM

Time for an advocacy update! ⏰

Register now to hear what we've been up to, and what's to come Hello Advocate,    Join us Wednesday, September 13 at 1 p.m. ET for an advocacy community update. The Foundation and our volunteers have been hard at work this summer advancing policy priorities that affect the lives of people liv…

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  Cystic Fibrosis Foundation · [email protected]

August 24, 2023 at 8:06 PM

Together: a Community Update

The latest updates for August 24, 2023 August 24, 2023  Some Maximizers May Be Misadvising People With Cystic Fibrosis  Certain copay maximizer programs, which partner with insurance companies to offset the costs of medications, are telling people with CF not to contact Compass for support in…

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  Cystic Fibrosis Foundation · [email protected]

August 17, 2023 at 5:02 PM

Read the latest research updates

Genetic therapies, NTM spotlight, modulator news, and more CF RESEARCH UPDATE Summer 2023 The Cystic Fibrosis Foundation is excited to share the latest news and developments in CF research. Potential Treatments for Those Who Can't Take Modulators Genetic therapies, such as gene therapies a…

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  Cystic Fibrosis Foundation · [email protected]

August 10, 2023 at 8:21 PM

Together: a Community Update

The latest updates for August 10, 2023     CF Foundation Announces New Members of Board of Trustees  We recently welcomed three new members to our Board of Trustees and Advisors who bring a breadth of experience spanning science, business, philanthropy, community engagement, and venture capit…

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  Cystic Fibrosis Foundation · [email protected]

July 27, 2023 at 8:29 PM

Together: a Community Update

The latest updates for July 27, 2023   Inaugural Golden Ticket Winner to Receive Additional Funding Last July, Nosis Bio won the Foundation’s inaugural Golden Ticket competition. A year later, we recently announced that we’ll be investing up to $2 million with them to explore safely deliveri…

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  Cystic Fibrosis Foundation · [email protected]

July 24, 2023 at 2:06 PM

A few highlights of our recent advocacy wins

Advocate, your stories sparked change Dear Advocate,   This year, the CF community has served as a powerful force in protecting and strengthening access to treatments and care through state and local advocacy efforts. Since January, community members have sent more than 35,000 messages to membe…

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  Cystic Fibrosis Foundation · [email protected]

July 13, 2023 at 8:12 PM

Together: a Community Update

The latest updates for July 13, 2023   CF Advocate Provides Testimony at Congressional Hearing on Impact of Antimicrobial Resistance  This week, we were proud to have Melanie Lawrence, an adult with cystic fibrosis, testify before a Senate subcommittee regarding the impact of antimicrobial r…

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  David Elin – Cystic Fibrosis Foundation · [email protected]

July 10, 2023 at 3:02 PM

Melanie Lawrence to testify before Congress!

Help amplify her story with your member of Congress. Advocate,   We are excited to share that Melanie Lawrence, an adult living with cystic fibrosis, has been invited to testify before the Senate Health, Education, Labor and Pensions (HELP) Subcommittee on Primary Health and Retirement Securi…

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  Cystic Fibrosis Foundation · [email protected]

June 22, 2023 at 8:22 PM

Together: a Community Update

The latest updates for June 22, 2023   Enroll in a Genetic Therapy Clinical Trial Advances in genetic therapies represent an opportunity to end cystic fibrosis as we know it. Critically, they could potentially benefit anyone with the disease, regardless of their individual mutation. Explore …

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  David Elin – Cystic Fibrosis Foundation · [email protected]

June 22, 2023 at 12:02 PM

Support our teen advocates: Tell Congress, act now

We need your help to amplify our message Advocate,   Today, more than 60 teens from across the country will meet with members of Congress during the Foundation’s 15th annual Teen Advocacy Day — and you can help maximize their impact.   Congress is considering two bills that will ensure peopl…

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  Amanda Zar - CF Foundation · [email protected]

June 15, 2023 at 2:03 PM

The CF Foundation Legacy Challenge Match begins today!

There's no better time to join our Legacy Society The 2023 Legacy Society Challenge Match begins 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]

June 8, 2023 at 8:22 PM

Together: a Community Update

The latest updates for June 8, 2023   Our 2022 Annual Report is Here Together, we made tremendous advancements in 2022. The median age of survival for a child with cystic fibrosis born today is 56 years old, we invested $265 million in research and care, and the number of people in the U.S. …

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  Cystic Fibrosis Foundation · [email protected]

June 7, 2023 at 3:02 PM

There's still time to register for NextBreath!

Join others in the CF community June 13-14 Are you or your loved one living with established cystic fibrosis lung disease or navigating life after lung transplant? Don’t miss NextBreath, a free, two-day virtual event June 13-14 for people living with CF and their family members to connect with…

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  Cystic Fibrosis Foundation · [email protected]

June 5, 2023 at 3:35 PM

It's 65 Roses Day 🌹

Join our 65 Roses Club On June 5 — 65 Roses Day — we tell the 65 Roses story and celebrate the resiliency, determination, and heart of the cystic fibrosis community. Although we have made a lot of progress in combatting CF, on this 65 Roses Day, we also recognize our work will not be finished …

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  Cystic Fibrosis Foundation · [email protected]

June 4, 2023 at 10:18 PM

Tomorrow we celebrate 65 Roses Day

Here's why this day is special to our community The 65 Roses story dates back to 1965 when 4-year-old Ricky Weiss, hearing the name of his disease for the first time, pronounced cystic fibrosis as “65 Roses.” The term took off for young children and today, “65 Roses” is referenced by children …

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  Cystic Fibrosis Foundation · [email protected]

June 1, 2023 at 3:32 PM

You’re invited to NextBreath!

Join others in the CF community June 13-14 Registration for NextBreath is now open!     At NextBreath, you can find community and connection with your peers through small group discussions, one-to-one conversations, panel discussions, and keynotes. People with cystic fibrosis and their famili…

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  Cystic Fibrosis Foundation · [email protected]

May 25, 2023 at 8:25 PM

Together: a Community Update

The latest updates for May 25, 2023   CF Foundation Provides Up to $3.9M to TB Alliance The CF Foundation is providing up to $3.9 million to TB Alliance to conduct lab testing of a compound that could eventually be used to treat infections caused by nontuberculous mycobacteria (NTM) in peopl…

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  David Elin – Cystic Fibrosis Foundation · [email protected]

May 18, 2023 at 3:05 PM

Tell Congress: no work requirements

Take action today to protect access to critical programs like Medicaid Advocate,   Congress is negotiating to raise the debt limit and is considering a deal that would implement work requirements as a condition of eligibility for key programs like Medicaid and the Supplemental Nutrition Assi…

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  Cystic Fibrosis Foundation · [email protected]

May 11, 2023 at 8:30 PM

Together: a Community Update

The latest updates for May 11, 2023   Kalydeco Approved for Children Ages 1-4 Months With Certain CF Mutations  Last week, the U.S. Food and Drug Administration approved Kalydeco® (ivacaftor) for infants with cystic fibrosis ages 1 month to 4 months who have certain mutations. Although this …

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  David Elin – Cystic Fibrosis Foundation · [email protected]

May 2, 2023 at 2:47 PM

Let's get this done ✅

Tell Congress to pass the PASTEUR Act Advocate,    Congress has reintroduced the PASTEUR Act to bring new antibiotics into the hands of those who need them most. Now it’s our turn: urge your members of Congress to pass this bill without delay. ACT NOW Despite significant progress in t…

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  Cystic Fibrosis Foundation · [email protected]

April 27, 2023 at 8:28 PM

Together: a Community Update

The latest updates for April 27, 2023   Trikafta Approved for Children Ages 2-5 Years With Certain CF Mutations Yesterday, the U.S. Food and Drug Administration approved the use of Trikafta® (elexacaftor/tezacaftor/ivacaftor) for children with cystic fibrosis ages 2-5 years who have at least…

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  Cystic Fibrosis Foundation · [email protected]

April 19, 2023 at 7:31 PM

ResearchCon is just one week away

Engage with clinicians, researchers, and members of the CF community How has the integration of mental health changed cystic fibrosis multidisciplinary care?   What do we know about the impact of CFTR modulators on the mental health of people with CF?   How do you navigate the unknowns of livin…

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  Cystic Fibrosis Foundation · [email protected]

April 17, 2023 at 8:02 PM

Join the National Volunteer Week celebration! 🎉

You truly put the YOU in volunteer   Join us for Gratitude Hour During National Volunteer Week, we want to recognize the relentless efforts of our volunteers. From those living with cystic fibrosis and their family and friends, to care team members and researchers, to corporate supporters — all …

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  Cystic Fibrosis Foundation · [email protected]

April 13, 2023 at 8:24 PM

Together: a Community Update

The latest updates for April 13, 2023   CF Foundation Commits Up to $15.5M in Additional Funding for Potential Enzyme Therapy We recently agreed to provide up to $15.5 million to Anagram Therapeutics to conduct early-stage clinical trials of a novel enzyme replacement therapy. If the therapy…

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  Cystic Fibrosis Foundation · [email protected]

April 12, 2023 at 8:02 PM

The latest news and developments in CF research

Including genetic therapy investments, phage therapy highlights, and more CF RESEARCH UPDATE Spring 2023 The Cystic Fibrosis Foundation is excited to share the latest news and developments in CF research.   Genetic Therapy Investments The Foundation is dedicated to advancing transformati…

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  Cystic Fibrosis Foundation · [email protected]

March 30, 2023 at 8:23 PM

Together: a Community Update

The latest updates for March 30, 2023   New Lung Allocation System Introduced A new 100-point lung allocation system introduced March 9, 2023, intends to make the distribution of lungs more equitable and efficient by rebalancing the factors used to match lungs with donors. The new system pla…

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  Cystic Fibrosis Foundation · [email protected]

March 28, 2023 at 3:02 PM

ResearchCon is back April 26-27

Friend, will we see you there? Whether you have a personal or professional connection to cystic fibrosis, you’re invited to ResearchCon, a free, virtual event, April 26-27, to learn and discuss the latest in CF-related science, research, clinical care, and lived experience alongside others livi…

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  Cystic Fibrosis Foundation · [email protected]

March 16, 2023 at 8:25 PM

Together: a Community Update

The latest updates for March 16, 2023   CF Foundation Invests Up to $2M in Nanite Inc. to Conduct Early-Stage Research in Gene Delivery We are investing up to $2 million in Nanite Inc. to explore a new way to deliver genetic therapies into the lung — delivery is one of the most significant c…

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  Mary Dwight – Cystic Fibrosis Foundation · [email protected]

March 14, 2023 at 8:02 PM

Thank you 👏

Your voice made a difference Advocate,    Last week, more than 175 advocates, including nearly 30 people living with cystic fibrosis, and more than 4,500 community members from across the country raised their collective voices and advocated for the CF community during the CF Foundation's 16t…

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  Mary Dwight – Cystic Fibrosis Foundation · [email protected]

March 9, 2023 at 1:22 PM

Urge Congress to act now for people with CF 🚨

Join our Online Day of Action Advocate,    Congress is considering two bills that could help people with cystic fibrosis and we need your help to urge them to act swiftly. The HELP Copays Act The HELP Copays Act helps to lower out-of-pocket costs for people with CF by: Restricting cost con…

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  Cystic Fibrosis Foundation · [email protected]

March 2, 2023 at 9:34 PM

Together: a Community Update

The latest updates for March 2, 2023   Journal of CF Highlights Results From Survey on Access and Affordability  The Journal of Cystic Fibrosis recently published a study detailing the cost burden associated with cystic fibrosis. The study, commissioned by the Foundation in 2019 and conducte…

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  Cystic Fibrosis Foundation · [email protected]

February 21, 2023 at 4:23 PM

Reminder: BreatheCon starts this Thursday!

Have you registered yet? BreatheCon starts this Thursday! Will we see you there? RSVP BreatheCon provides a unique opportunity to virtually gather with other adults with cystic fibrosis in a welcoming, inclusive space where you can be your authentic self. Over the course of three days, you …

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  Cystic Fibrosis Foundation · [email protected]

February 16, 2023 at 9:33 PM

Together: a Community Update

The latest updates for February 16, 2023 CF Foundation External Racial Justice Working Group Releases New Recommendations  To work toward addressing health inequities in cystic fibrosis, the Foundation’s External Racial Justice Working Group has been focusing on the unique challenges Black …

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