09/16/2022 – Learning to Live With CF After a Late Diagnosis – Finding your path to life with CF provides lessons that can be applied to aspects of your life.
09/17/2022 – Living With CF Does Not Make Me a Hero – We tend to put the “hero” or “warrior” label on people managing their lives with CF. Maybe that’s not fair; maybe we should just let them be regular folks.
09/18/2022 – Making Lifelong Friendships With Other Moms of Kids With CF – No one understands a person with CF like another person with CF. The same goes for moms and other family members.
09/19/2022 – Community Stories – Victoria Lachowska – Hypertonic saline is part of some treatment plans; however, it usually doesn’t come with seaside vacations.
09/20/2022 – Supplemental Oxygen May Alter Lung Microbiome in CF Patients – There’s a saying that goes “the solution to the problem only changes the problem.” This research indicates that the use of supplemental oxygen to address low levels may contribute to other negative aspects of lung disease.
09/21/2022 – Two Years Ago This Week, I Decided My Life Needed to Change – Improvements in treatments have produced steady progress for longer life with CF, but the introduction of CFTR modulators was a dramatic change that allowed a new focus on the future.
09/22/2022 – Not Being Prepared to Outlive Your Loved Ones – Here’s a different take on survivor’s guilt.
09/23/2022 – CF Care and Research Education & Connection Survey – From the Cystic Fibrosis Foundation: “The CF Foundation is conducting a survey to learn which areas of science, care, and life with CF community members are most interested in learning about and discussing with peers. Results from this survey will help inform 2023 educational and connection opportunities, including virtual community conferences, research webinars, and other relevant content. To participate in this 5-minute survey, please clink on the link by Sunday, October 2nd at 11:59 p.m., ET. https://www.surveymonkey.com/r/XFQM38X?W4H6FHB=%5bW4H6FHB_CV
09/24/2022 – “The results will drive the research agenda in CF for the next five years”: Zoë on why the QuestionCF project matters – This article is about the research agenda for the UK’s Cystic Fibrosis Trust but the rationale applies equally to the research priorities for the Cystic Fibrosis Foundation in the US.
09/25/2022 – How Changes in Routine Can Make Treatment Compliance More Difficult – Bumps in the road – small and large – can break your treatment patterns. The key is adjusting.
09/26/2022 – Can a person’s nasal cells tell us whether they should take Trikafta? – CF Canada is funding research to promote personalized treatments. The article includes a link to a presentation on this topic by Dr. Christine Bear.
09/28/2022 – How Hospice Helped Me Through My Daughter’s Passing – Despite the advances in treatments, fatality is still a cloud over life with CF. This mother’s story provides a glimpse at dealing with the reality.
09/29/2022 – Tiny swimming robots treat deadly pneumonia in mice – This research is not directly related to CF but: (1) this is really cool science, and (2) the method could be applied to CF-specific infections.
09/30/2022 – Lung Clearance Index Detects Deterioration Earlier, Study Finds – A clinical test could provide earlier evidence of advancing lung disease which could then prompt treatments to improve long-term outcomes.