Our latest must-read developments


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# January/February Update

Highlights

* New modulator Alyftrek approved
* Study results on Trikafta and GI symptoms
* Funding for research into lung transplant complication



CF Foundation Responds to NIH Funding Cuts

The CF Foundation is opposed to
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% link:[link removed] name="NIH Statement link in text" content="" %]
% link:[link removed] name="NIH link in text" content="the recent decision by the National Institutes of Health (NIH)" %]
to set the reimbursement rate for indirect costs -- funding which covers expenses such as equipment and lab space -- to 15%. The rapid implementation and scale of these cuts will significantly hamper research institutions and impede critical scientific advances. We remain steadfast in our commitment to ensuring the continuation of critical CF research by supporting the CF research community and the NIH.

Read CF Foundation’s statement » ([link removed])




FDA Approves Alyftrek, Expands Label for Trikafta

In December, the U.S. Food and Drug Administration (FDA) approved the
new triple-combination modulator Alyftrek ([link removed])
(vanzacaftor/tezacaftor/deutivacaftor) for people with CF ages 6 and older who have a mutation that is eligible for Trikafta or one of 31 rare mutations not previously approved for a modulator.

The FDA also approved
the expansion of Trikafta ([link removed])
(elexacaftor/tezacaftor/ivacaftor) to people with CF ages 2 and older who have at least one of 94 rare mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.

Review the list of eligible mutations » ([link removed])




Clinical Trial Starts for mRNA Therapy


Arcturus Therapeutics ([link removed])
is conducting a Phase 2 trial of its messenger RNA (mRNA) therapy. Interim results are expected in the first half of 2025. Arcturus is one of three companies with mRNA therapies for CF in clinical trials.

Learn more about mRNA clinical trials » ([link removed])




Study: Improvement in GI Symptoms for Those on Trikafta

Gastrointestinal (GI) symptoms seemed to improve in adults with CF during the first 1.5 years after starting Trikafta, however, those benefits seem to wane with longer term use, according to
a study in the Journal of Cystic Fibrosis ([link removed]). Study authors were unsure whether this is because of more missed doses of Trikafta or pancreatic enzymes over time, a decrease in Trikafta's effects on GI symptoms, or other reasons. They concluded that more research is needed on the effects of modulator therapies on GI symptoms.



Reduce Your Risk for Colon Cancer

March is
Colorectal Cancer ([link removed])
Awareness Month. Adults with cystic fibrosis face a colorectal cancer risk that is 5-10 times greater than the general population -- and even higher for people with CF who receive a lung or other organ transplant. Colonoscopies are the most effective screening method and need to be started at age 40 for people with CF and often at age 30 for those who have had a transplant (depending on when the transplant occurs).

Learn more about colorectal cancer and how to reduce your risk » ([link removed])




Funding to Address Lung Transplant Complication

We provided nearly $4.5 million in funding to research projects focused on addressing chronic lung allograft dysfunction (CLAD), a post-lung transplant complication related to chronic organ rejection. CLAD is the leading barrier in long-term survival in people with CF post-lung transplant. Among other things, the projects will focus on early detection and diagnosis of CLAD.

For more information on lung transplants, please visit the newly updated
lung transplant section ([link removed])
of our website. The content includes everything from
finding a lung transplant center ([link removed])
to surgery and recovery.

Read more about lung transplantation » ([link removed])




Educational Videos Now Available in Spanish

Several medical animation videos covering a range of CF topics are now available in Spanish. These translated videos feature Spanish narration, onscreen text, and closed captions. Check out the following videos on the Foundation's YouTube channel:

* CF and CF Treatments -- A Look Inside the Lungs: This series of four videos explains how CF affects the lungs and explores several treatments, including inhaled antibiotics, mucus thinners, and airway clearance techniques. (
% link:[link removed] name="Watch in English" content="Watch in English" %]ǀ
Watch in Spanish ([link removed]))
* Emerging Genetic Therapies for CF: This video explains how genetic therapies -- including mRNA therapy, gene therapy, and gene editing -- would work in the lungs of people with CF. (
% link:[link removed] name="Watch in English" content="Watch in English" %]ǀ
Watch in Spanish ([link removed]))





Meet the Clinical Trial Navigator Video


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Do you have questions about clinical trials and how to find ones relevant to you or your loved one? If so, Katie Howe, the Foundation's
clinical trial navigator ([link removed]), can help.
In this video ([link removed]), she provides a brief overview of how she works with people interested in a CF clinical trial as well as her contact information.

Watch now >> ([link removed])




Join CF Circles Discussion Groups


CF Circles ([link removed])
is a space for adults with cystic fibrosis to gather virtually for hourlong small-group discussions with people who understand the unique ups and downs of living with CF. Registration has opened for these upcoming sessions focusing on:

*
February 25: Sexual Health ([link removed])
*
March 25: Living Longer With CF ([link removed])
*
April 15: Life as a Black Person With CF ([link removed])





Stay connected with the CF Foundation via our social media channels or visit
cff.org/news ([link removed])
for the latest updates.


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