Our latest must-read developments


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# September/October Update

GENETIC THERAPIES

Foundation Invests an Additional $3 Million in Messenger RNA Therapy

We have invested an additional $3 million in ReCode Therapeutics to provide further support for an ongoing Phase 2 clinical trial of its
messenger RNA (mRNA) therapy ([link removed]). This therapy has the potential to help all people with CF, including those with rare and nonsense mutations who do not benefit from modulators, such as Trikafta.


Learn more about our investment >> ([link removed])




SpliSense Reports Positive Results From Phase 2 Trial

SpliSense reported positive results from its ongoing,
early Phase 2 clinical trial ([link removed])
for its RNA-based drug for people with CF who have the splicing mutation, 3849+10kb C-to-T. Data from the first two groups in the study showed improvement in lung function in the majority of the people with CF who received the antisense oligonucleotide therapy. No safety issues were reported.




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INFECTION RESEARCH

Foundation Invests in Development of Engineered Phage Therapy

We are investing up to €6.5 million ($7.6 million) in SNIPR Biome to help develop a phage therapy to eliminate persistent Pseudomonas infections in people with cystic fibrosis. SNIPR plans to use gene editing tools to engineer phages -- a type of virus that targets bacteria -- to improve their ability to kill bacteria.


Explore the details >> ([link removed])




Need for New Infection Diagnostics Tests Drives Recent Investments

We are investing $350,000 in MiDx to develop a urine test to detect Pseudomonas infections in people with CF. This investment underscores our commitment to advancing detection and diagnostic tools that do not rely on sputum, which can be difficult to collect -- especially from children and adults taking modulator therapies that reduce mucus production. This marks our third investment this year in Pseudomonas detection technologies, which also includes: a $2.3 million investment in Owlstone Medical to develop a breath test and a $500,000 investment in Pearl Diagnostics to develop a urine test.



HEALTH CARE

Managing CF Pain

Managing pain associated with cystic fibrosis is an important part of life for many people with the disease. Learn how to talk with your care team about the pain you have and ask about developing a plan that helps you manage it.

Learn about managing pain >> ([link removed])




Stay Protected From Respiratory Illnesses

We recommend everyone with CF who is eligible should get their flu, COVID-19, and RSV vaccines. Those who live with -- or have close contact with -- people with CF should be vaccinated, too. Although vaccines cannot prevent all cases of flu, COVID-19, or RSV, they can prevent or reduce the severity of these infections.

Learn more about protecting yourself from respiratory illnesses >> ([link removed])




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CLINICAL TRIALS

New Parents With CF Needed for Study

Join the Health Outcomes of Parents with Cystic Fibrosis (HOPeCF) study to help CF care teams better support people with CF during early parenthood. The study is
recruiting people with CF who are new parents ([link removed])
to help understand if, when, and how parenthood affects lung function, mental health, stress, and other CF-related health outcomes. Study participants will complete 12 online surveys over a 5-year period and receive $30 per completed survey. Researchers also will collect data from participants' medical records.

Interested? Learn more by completing this brief form >> ([link removed])




Other enrolling studies:

*
Bionic Pancreas ([link removed]): Evaluating the safety and effectiveness of an insulin-only Bionic Pancreas system compared to using one's usual insulin delivery method.
*
RETRIAL ([link removed]): An observational study that will monitor the mental health and liver function of people with CF who discontinued Trikafta and started taking Alyftrek.
*
SPECTRUM ([link removed]): Monitoring CF-related diabetes complications in teens and adults from different backgrounds.



Have questions about clinical trials and how to find ones relevant to you or your loved one? Contact
Katie Howe ([link removed]), the Foundation's clinical trial navigator.



GET INVOLVED

Get the Latest Research and Care News From NACFC

Don't miss your chance to hear the latest advances in CF research and care at the annual North American Cystic Fibrosis Conference (NACFC). The free livestream includes three plenaries, as well as six sessions selected by members of the CF community. The livestream will be interpreted live in Spanish. Can't join us live? Recordings of many NACFC sessions will be posted on YouTube soon after the conference -- no registration required.

Register for the NACFC livestream >> ([link removed])




We also will be hosting a Post-NACFC Highlights Webinar from 7-8 p.m. ET on Dec. 10. Two researchers will discuss the top research and care news from the conference and answer your questions.

Register for the post-NACFC Highlights Webinar >> ([link removed])




Join a Small Group Discussion


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

* Oct. 29:
Advancing CF Lung Disease and Life Post-Transplant ([link removed])
(open to caregivers)
* Nov. 11:
CF-Related Diabetes ([link removed])
* Dec. 9:
Living With GI Issues ([link removed])
(an additional session will be open to parents/caregivers)





POLL QUESTION

Cast your vote for our new Research and Care tagline!



A. Your go-to source of cystic fibrosis news. From new studies to emerging treatments and health resources, we're here to keep you up-to-date, empowered, and ready to take charge of your health.


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B. Stay informed. Empower yourself. From new studies to emerging treatments and health resources, we give you the information and tools to take charge of your health.


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



Have a question or topic you'd like us to explore in a future issue? Email us at [email protected] -- we'd love to hear from you.


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