Our latest must-read developments


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# March/April Update

Highlights

* Study for people not on modulators
* Newborn screening recommendations published
* Register for ResearchCon



Genetic Therapies Webinar Recording Is Available

In case you missed it, you can watch the recording of our latest webinar on genetic therapies. Kara Foshay, PhD, and Heather Hathorne, PhD, share an overview of genetic therapies, starting from the basics, and discuss genetic therapy clinical trials, including what participation in a clinical trial may entail.


Watch now >> ([link removed])

A webinar on the same topic will be held
tonight in Spanish at 7 p.m. ET ([link removed]). All registrants will receive a link to the recording after the event.



CF Foundation Responds to Abrupt Workforce Cuts at NIH and FDA

Federal health and science agencies play critical roles in helping people with CF manage daily life and fostering the innovation needed to find a cure for all. The Foundation voiced deep concerns over how the abrupt nature and scale of layoffs at the NIH, FDA, and other agencies will
undermine safety-net programs ([link removed])
that are lifelines for many patients and have a detrimental impact on
advancements in CF treatment ([link removed])
and care now and for years to come.



REACH Study: Be Part of the Future of Cystic Fibrosis Treatments

Are you living with cystic fibrosis but not on CFTR modulators? The
REACH study ([link removed])
is actively enrolling participants like you to share health info and blood samples for research. By participating, you can help shape the future of CF treatment for people with CF who don't respond to current modulator therapies.

Participants will receive compensation and travel costs will be covered. Plus, you'll get a home spirometer and could join specialized studies focused on lung function and blood cells.

Join the effort to improve CF care and treatment ([link removed]). Your participation could make a difference!

Other studies that are enrolling:

*
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])
An observational study that will monitor cystic fibrosis-related diabetes complications in a group of teens and adults from different backgrounds.





Newborn Screening Recommendations Published

The International Journal of Neonatal Screening recently published
recommendations for CF newborn screening ([link removed]). The guideline includes seven recommendations covering best practices related to testing, mutation analysis, genetic sequencing, and notification of results. The guideline represents a significant milestone of the Foundation's Newborn Screening Initiative, a multi-year effort to advance CF newborn screening and achieve better health outcomes for all babies born with the disease, regardless of background.

Read more about our newborn screening recommendations >> ([link removed])




Sexual and Reproductive Health

Modulators Improved Lung Function in Pregnant People With CF

People with CF who were pregnant and using modulators, such as Trikafta, had improvements in lung function, while those who did not use modulators experienced a decline in lung function,
according to a study ([link removed])
published in the journal Chest. Researchers analyzed data from 307 pregnancies between 2010 and 2021.

Submit Comments on Sexual and Reproductive Health Issues

We are seeking community input on a draft position paper that covers sexual and reproductive health in people with CF, including care delivery, birth control, pregnancy, fertility, and CFTR modulator therapy exposure while pregnant or breastfeeding. When finalized, the position paper will provide guidance to the CF care center network and the community on these topics. All people with CF and families are invited to review the draft position paper and share feedback through April 23 at 5 p.m. ET.

Read the paper and submit your comments >> ([link removed])

New Web Page Highlights Research

Research Into Sexual and Reproductive Health ([link removed])
highlights new and ongoing research to address the issues and concerns experienced by people with CF related to pregnancy, fertility, parenting, and more.



Advanced Lung Disease and Transplant

Annual Report on Advanced Lung Disease and Transplant Is Available

The
2024 Advanced Lung Disease and Transplant Year in Review ([link removed])
covers the accomplishments of our Advanced Lung Disease and Lung Transplant Program. Updates include the publication of a
checklist ([link removed])
that can help people keep track of needed care after a transplant, a webinar on how CF and transplant teams can coordinate care after transplant, and a workshop for researchers on designing lung transplant clinical trials.

Read the report >> ([link removed])

Join Virtual Events

* Register for a CF Circles small group discussion
May 13 on life after transplant ([link removed])
and connect with other adults with CF (ages 18 and older) who have received a lung transplant. Chat with others who understand your journey, share valuable insights, and exchange personal experiences.
* Don't miss the ResearchCon session on
Post-Transplant Research from 6:30-7:40 p.m. ET on May 6 ([link removed]).



Donate Life Month

April is National Donate Life Month, which aims to increase awareness about eye, tissue, and organ donation and
transplantation ([link removed])
and to encourage people to
register to donate their organs ([link removed]).



Registration Is Open for ResearchCon - May 6


Don’t miss ResearchCon ([link removed]), a virtual event that allows participants to learn about and discuss CF-related science and care alongside others living with and studying the disease. Participants can ask questions and use the information to better advocate for themselves, their loved ones, or their patients. Topics include gastrointestinal symptoms and a first-person account of participating in a genetic therapy clinical trial.

Join us for ResearchCon! >> ([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:

* April 15:
Life as a Black Person With CF ([link removed])
(Also open to caregivers)
* June 10:
Life Without CFTR Modulator ([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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