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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  Cystic Fibrosis Foundation · [email protected]

February 14, 2023 at 7:21 PM

Let love bloom this Valentine's Day

Show your love by joining the 65 Roses Club 🌹 Friend,   With you by our side, everything's coming up roses.   Join the 65 Roses Club and become a monthly donor in honor of someone you love. Your ongoing commitment will help accelerate research, support programs to help the cystic fibrosis comm…

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  Cystic Fibrosis Foundation · [email protected]

February 2, 2023 at 9:35 PM

Together: a Community Update

The latest updates for February 2, 2023 Connect With the CF Community at a Local Event Whether you walk, climb, cycle, hike, or create your own unique activity, you are part of a larger community committed to fulfilling our mission: finding a cure for cystic fibrosis. Register now for Great…

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  Cystic Fibrosis Foundation · [email protected]

February 1, 2023 at 4:35 PM

Register now for BreatheCon

A unique virtual event, February 23-25 Register now to join the CF community February 23-25 at BreatheCon, a unique virtual event for adults with cystic fibrosis. SAVE MY SEAT NOW At BreatheCon, you choose your own adventure. If you’d like to meet new people, you can participate in 1-1 net…

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  Cystic Fibrosis Foundation · [email protected]

January 19, 2023 at 9:35 PM

Together: a Community Update

The latest updates for January 19, 2023 Reflecting on Progress Toward Equity, Racial Justice, Diversity, and Inclusion Last year, we took several important steps to progress toward equity, racial justice, diversity, and inclusion and better understand the challenges that Black, Hispanic, an…

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  Cystic Fibrosis Foundation · [email protected]

January 18, 2023 at 7:26 PM

Register now for the National Annual Meeting

Hear from inspiring CF Foundation leaders Hear from CF Foundation leaders about their focus for 2023 REGISTER NOW Michael Boyle, MDPresident and CEO Steven Rowe, MD Chief Scientific Officer Whitney Brown, MDClinical Affairs Director, Sr. Tiffany BurnettBiopharma Programs Director,…

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  Cystic Fibrosis Foundation · [email protected]

January 9, 2023 at 9:58 PM

Register for an event near you!

Join the CF community in 2023 Friend of the CF Foundation,   Exciting news — registration is now open for CF Foundation events! Whether you’ve participated with us for decades or are considering signing up for your first event, we invite you to see what the CF community is all about.   There…

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  Cystic Fibrosis Foundation · [email protected]

January 5, 2023 at 9:27 PM

Together: a Community Update

Register for the National Annual Meeting You’re invited! Join us to hear President and CEO Michael Boyle, MD, share his vision for the year ahead during our National Annual Meeting, Thursday, January 26 at 8 p.m. ET/ 5 p.m. PT. We will host an engaging panel discussion with CF Foundation lead…

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  Cystic Fibrosis Foundation · [email protected]

January 1, 2023 at 12:24 AM

Last chance to give in 2022 ⌛

Your support brings us one step closer to a cure Friend,   Winning the fight against cystic fibrosis means working harder and faster. Make your year-end gift before midnight to help us accelerate our mission for people with CF. GIVE NOW With your support, we are confident that we can end…

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  Cystic Fibrosis Foundation · [email protected]

December 31, 2022 at 1:28 PM

Help end CF

Make a difference in 2023 and beyond Dear Friend,   This year, there has been so much to celebrate. Together, we achieved scientific advancements and made progress toward our goal: finding a cure for everyone with cystic fibrosis. I WANT TO HELP But we’re not slowing down. Genetic therapi…

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  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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