04/16/2022 – What I Learned While Trying to Get Pregnant – The dream of parenthood is becoming more reality than dream in the CF world. This mom has some encouraging words.
04/18/2022 – Lung Clearance Index May Predict Lung Damage in Children – Earlier detection equals earlier intervention equals better long-term results. This approach not only suggests earlier detection but also employs a non-invasive technique.
04/19/2022 – Mark You Calendar for Education Day 2022 – We’re looking forward to another informative Education Day when we present “Pursuing Mental Wellness” on August 10th.
04/20/2022 – 2022 Kit Taylor Memorial Lecture – This brief summary of this year’s Kit Taylor Memorial Lecture includes a link to a recording of the presentation.
04/21/2022 – Community Grant Review of Tools for Remote CF Care Delivery – Here’s an opportunity to get involved in the development of resources for your personal care.
04/22/2022 – “For CF research there are lots of interesting puzzles to solve”: Dr Lucy Allen, Director of Research – While this article refers to the process of setting research priorities in the UK, the exchange between a person living with CF and a lead researcher is relevant everywhere.
04/23/2022 – If Vertex Has Such a Commanding Hold on the CFTR Modulator Market, Why Are Other Drug Makers Joining the Race? – Once again, Gunnar Esiason applies the knowledge from his business degree to an analysis of the CF world; this time the drug marketplace.
04/24/2022– Common Environmental Fungus Can Worsen Lung Function in CF Children – CF lungs are fertile ground for several organisms that do not adversely affect non-CF lungs. This study points to the need for early detection of fungal colonization as well as bacteria.
04/25/2022 – The Best Reluctant Decision I Ever Made – This story demonstrates that the transplantation decision in not straightforward and full of conflicting emotions.
04/26/2022 – “I think if you can get the best produce, and cook it the best you can, it speaks for itself”: Mark’s story – Here’s a fun story about doing your best regardless of challenges. BTW, Great British Menu seems to be a cross between Top Chef and Chopped.
04/27/2022 – Noninvasive Elastography Predicts Liver Scarring Severity in Children – This study reminds us that CF is a full body disease. As an aside, it also reminds us that valuable research also takes place outside the US.
04/28/2022– A Look at the Pandemic Then and Now – Hopefully, you haven’t had such a difficult time over the last two years. The underlying story is resilience.
04/29/2022 – Adapting to Post COVID Schools – We’ve provided a link to CFF’s updated guidance for returning to school. While the guide was prompted by concerns in the post COVID environment, the advice is relevant to all school settings.
04/30/2022 – 5 things to know about the RECOVER study – The UK is pursuing the Real World Clinical Outcomes with Novel Modulator Therapy Combinations in People with CF (RECOVER) to look at effects of Trikafta (Kartrio in the UK) that were not included in the clinical trials. The article includes a link to a more complete report.