Cystic Fibrosis Family Connection

In her story, Isobel says she has been very lucky. That doesn't mean she has not had to overcome challenges.

“I think my biggest piece of advice is talking about CF, but also realising that you can do more than you might think” – Isobel, 23. We spoke with Isobel about her CF journey, running the Cardiff Half Marathon, and the importance of positive stories.

This research has two interesting results. One, the benefit of “growing” cells to test the effectiveness of a specific treatment. Two, nasal cells do not have the same reaction as bronchial cells to Orkambi.

Researchers eye differences in upper, lower airway epithelial cells Cell culture models of upper and lower airway epithelial cells may help explain the mechanisms underlying cystic fibrosis lung disease.

“Growing up” is learning how to handle challenges so they don't get in the way of your dreams.

CF Can’t Stop Me From Doing What I Love Having cystic fibrosis means that hospitalizations are nothing new to me. But as I get older, I am much more aware of all the events I'm missing out on — birthdays, concerts, and school field trips. So this fall, I decided to take my life back from cystic fibrosis.

Promising results in a treatment alternative for Pseudomonas which is resistant to antibiotics.

BX004 phage therapy improves CF lung function: Top-line trial data Phage therapy BX004 was found to improve lung function in CF patients with lung impairments in a Phase 1/2 trial, top-line data show.

This article, including a video, describes an area of research to build clinical test models that more accurately replicate the conditions in CF lungs.

Inside the lab with CF researcher Hollie For this month’s ‘Inside the lab’ researcher profile article, we caught up with PhD student Hollie Leighton. Based at the University of Liverpool, Hollie’s research is co-funded by Cystic Fibrosis Trust and the CF Foundation in the United States of America as part of our ‘PIPE-CF’ Strate...

Creating environments that mirror those in CF lungs is an important step in finding effective treatments for lung infections.

Scientists take a step forward in understanding how to tackle chronic infections in cystic fibrosis patients Scientists have engineered a living material resembling human phlegm, which will help them to better understand how a certain kind of infection develops on the lungs of patients with cystic fibrosis.

This story not only conveys the value of tenacity but informs us about additional disease associated with CFTR mutations.

Chasing a Diagnosis It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of cystic fibrosis-related metabolic syndrome. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.

This study demonstrates that Trikafta is not a silver bullet. It is not an argument against Trikafta; rather a call for a broader assessment of outcomes.

Kaftrio, Trikafta in US, helpful but may have lasting side effects A real-world study of 92 patients in Italy found broad benefits with treatment but insomnia or other side effects across its six months.

Another story about a new outlook and the need to adjust one's world view after Trikafta.

Finding Myself After Starting Trikafta Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators ...

As noted in the opening of this article, “understanding where the bugs that cause CF infections come from and how the infections are passed on...can be used in the future to prevent people from becoming infected.”

New advances in understanding how CF lung infections develop This week is World Antimicrobial Resistance Awareness week; it’s an opportunity to highlight research we’re funding to understand and treat CF lung infections. Some lung infections are becoming increasingly resistant to antimicrobial treatments such as antibiotics. This means that the treatments...

Although this is ultimately a fund raising plea for Cystic Fibrosis Canada, the story is a reminder that we need to keep working to help those not currently benefiting from CFTR modulators.

Chanelle's Journey with Cystic Fibrosis - Cystic Fibrosis Canada Blog Hello, I’m Chanelle, a 25-year-old CF warrior from Cornwall, Ontario. This year, I faced one of the biggest challenges of my life — the removal of my right lung. Despite...

This article focuses on the battle to improve newborn screening in New Jersey. It also highlights the difficulties in developing, and maintaining, reliable screening protocols.

Missed cases in New Jersey spur expanded CF newborn screening New Jersey's CF newborn screening program failed to identify the disease in five children, all of whom went on to have severe lung disease.

Happy Thanksgiving! While we give thanks for all the advances that have improved the lives of people living with CF, we must continue to support the efforts to find alternatives for those who do not yet benefit from, or have access to, the currently available treatments.

A look at the ongoing work to find solutions for resistant bacteria.

The other side of the window - Sarah’s visit to labs researching CF lung infections This week is World Antimicrobial Resistance Awareness Week; it’s an opportunity to tell you about exciting research to develop better ways to treat CF lung infections. Here, we report on Sarah’s visit to the labs of Trust-funded researcher Professor Jo Fothergill.

From the Cystic Fibrosis Foundation: “Have thoughts on CF Care? Living with CF can be very different for many people. Take the Adapting CF Care survey to share your thoughts on how CF Foundation care centers can better meet your or your loved ones’ needs. The survey, which takes 6 to 11 minutes, is available until December 20. Highlights from survey results will be shared in early 2024.

Adapting CF Care Survey Take this survey to understand how CF care that is provided at the care centers that we accredit across the country can better meet the changing needs of people living with cystic fibrosis.

Although the school year is underway, it's never to late to get tips on navigating school with CF.

6 Tips for A Successful School Year From a Counselor With CF Navigating school can be challenging when you have cystic fibrosis. The following tips can help parents and students feel prepared for a productive school year.

Chronic pain is an element of life with CF for many. This research holds promise for providing relief without side effects associated for some pain treatments.

New compound outperforms pain drug by indirectly targeting calcium channels A compound -- one of 27 million screened in a library of potential new drugs -- reversed four types of chronic pain in animal studies, according to new research. The small molecule, which binds to an inner region of a calcium channel to indirectly regulate it, outperformed gabapentin without trouble...

Although this story focuses on the author's marathon goals, the core lesson is to put time into learning what your body needs to sustain your preferred life style.

Learning to Fuel My Body as a Runner With CF When I realized how much my nutrition strategy was impacting my performance as a marathon runner, I decided to reevaluate my plan to be more intentional about how to best fuel my body before running.

This report emphasizes the need for continued research for new antibiotics and alternative treatments to combat bacterial infections.

UK Health Security Agency report reveals a post-pandemic bounce back in antibiotic resistant infections The UK Health Security Agency has shared the results of its ESPAUR report, highlighting the increase in antimicrobial resistance.

In this blog, the author provides the distinction between palliative and hospice care, and emphasizes the importance of palliative care.

National Hospice and Palliative Care Month honors those who... For National Hospice and Palliative Care Month, columnist Lara Govendo shares her perspective as a cystic fibrosis patient.

While this report applies to the United Kingdom, it highlights the struggle between effectiveness and cost.

Latest update on the NICE appraisal of Orkambi, Symkevi and Kaftrio Cystic Fibrosis Trust responds to NICE committee’s draft recommendations on modulator therapies Orkambi, Symkevi and Kaftrio

This blogger shares observations on her mental health experiences that were triggered by the third plenary session at the North American Cystic Fibrosis Conference. A link to the session (“There Is No Health Without Mental Health: Progress, Challenges, and Hope for the Future”) is included in the blog post.

There Is No Health Without Mental Health: Hope for the Future As someone who has fought to have my mental health struggles acknowledged in the past, I was heartened that the third plenary at this year’s North American Cystic Fibrosis Conference focused on the integration of mental health into CF care and research, as well as the mental health well-being of C...

A new four-part tool to assist in transplant planning was presented at the North American Cystic Fibrosis Conference. Importantly, the tool was designed to address populations who have historically had poor access to the procedure.

NACFC 2023: New tool aims to inform CF patients about lung transplant Take on Transplant is designed to provide disease-specific education and resources about lung transplants for people with cystic fibrosis.

This blogger relates her experiences to the second plenary session at the North American Cystic Fibrosis Conference. The story includes a link to the session, “Micro-Management: The Changing Face of CF Infection.”

The Future for Many Lies in Advancing Infection Research The second plenary at this year’s North American Cystic Fibrosis Conference focused on infections, how they are evolving as CF evolves, and how many people with CF still struggle with infections despite modulators. As a person with CF, the evolution of infection research has accelerated progress i...

This article does not mention CF specifically; however, the research could be good news. People living with CF are susceptible to fungal infections and would certainly benefit from an antifungal treatment that does not add strain to the kidneys.

New antifungal molecule kills fungi without toxicity in human cells, mice A new antifungal molecule, devised by tweaking the structure of prominent antifungal drug Amphotericin B, has the potential to harness the drug's power against fungal infections while doing away with its toxicity, researchers report.

This young musician has produced a music album that relays her life with CF.

Lucy and the 65 Roses EP We sat down with Lucy, a musician and songwriter with cystic fibrosis to hear all about her life with CF, her brand-new EP ‘65 Roses’ her launch event coming up this month.

Yesterday's post was a personal view of the promise of gene therapy. This article reports on an interim report from a clinical that shows encouraging results.

CF patients see quality of life gains with 4D-710 gene therapy: Trial The gene therapy also led to high expression of the CFTR protein in lung cells, at levels higher than what was expected by the developer.

This blogger reports on the plenary session at the North American Cystic Fibrosis Conference that dealt with the progress being made in genetic therapies. A link to the session recording is included in the blog.

What the Promise of Genetic Therapies Means to Me I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting...

Cystic Fibrosis Canada is funding a study that “explores the changing demographics of people with CF and the emerging conditions.” The article includes a link to a webinar on the study.

Older & Wiser: The complexities of ageing with cystic fibrosis with Dr. Anne Stephenson - Cystic Fibrosis Canada Blog Last month, Cystic Fibrosis Canada had the pleasure of hosting a webinar with Dr. Anne Stephenson on her study Getting Older & Wiser: the complexities of ageing with CF, which...

It's heartening to read stories about children with rough starts who get on the right track.

“I hope Jacob has a bright, long, fulfilled life”: Mum Morag shares Jacob’s story With your support this festive period, we can continue to fund research into life-changing treatments that work for everyone with cystic fibrosis (CF). Together, we can ensure children with CF, like two-year-old Jacob, can look forward to a brighter future.

Another case of basic research necessary to advance CF treatments. Understanding the wide range of Pseudomonas strains could lead to new diagnosis techniques and treatment approaches.

Complex genetic diversity found among P. aeruginosa infections A great deal of genetic diversity exists among strains of P. aeruginosa infections initially found in the lungs of cystic fibrosis patients.

Digestive problems are common in people living with CF; however, this story deals with extreme and, fortunately, rare complications. The coping strategies suggested in the story can be adapted to other conditions.

Coping With Gastrointestinal Problems My path to a total colectomy was long and challenging. Now I want to share what I learned about self-advocating for necessary medical care and coping with a surgically created opening on my abdomen called a stoma.

This study was targeted at individuals with Type 1 diabetes; however, it's possible that similar results could be achieved by individuals with CF-related diabetes.

Weekly insulin injections have the potential to be as effective in diabetes management as now-common daily injection regimes Insulin icodec, a once-weekly basal injection to treat type 1 diabetes, has the potential to be as effective in managing the condition as daily basal insulin treatments, according to new research. The results of the year-long phase 3 clinical trial could revolutionize the future of diabetes care and...

Another story that proves that life with CF is combination of similarities and unique aspects.

“I hope Jacob has a bright, long, fulfilled life”: Mum Morag shares Jacob’s story With your support this festive period, we can continue to fund research into life-changing treatments that work for everyone with cystic fibrosis (CF). Together, we can ensure children with CF, like two-year-old Jacob, can look forward to a brighter future.

This study put some data behind the experiences of families dealing with the progression to adulthood.

Transitions to adult cystic fibrosis care may be hardest on parents Parents of young people with cystic fibrosis retain a sense of responsibility for their children as they transition to adult healthcare.

Maintaining mental health is a challenge with a chronic disease. The risks can be increased by uncaring comments, but they can be mitigated by a strong support community.

Dealing With Judgment Growing up, I struggled with wanting to feel “normal” because I was bullied and judged by my peers for my cystic fibrosis. But then I found genuine friendship in college and learned what it means to feel truly supported.

Gene therapy has been an elusive element of CF treatment. This article describes a new approach to finding a viable delivery system.

Goal of new collaboration is non-viral gene therapy approach for CF Moligo Technologies is teaming up with Nationwide Children's Hospital to develop a non-viral gene therapy approach to treat cystic fibrosis.

We've had a strong response to this year's holiday décor offer, but we want to deliver more. Click the link to learn the details and fill out an order form.

Order Your 2023 Holiday Decor – Cystic Fibrosis Family Connection Although we haven’t had our first frost yet, it’s not too early to think ahead to the holiday season. CFFC is pleased to announce that we are now accepting orders for decor to brighten the home of someone living with CF or a CF caregiver.

Yesterday we shared a story of a woman diagnosed in her 60's. Today's story is the other end of the spectrum. It's interesting to note the reference to home visits by the CF nurse.

“We just want Oliver to know he's not the only one living with the condition”: Mum Zoe shares Oliver’s story With your support this festive period, we can continue to fund research into life-changing treatments that work for everyone with cystic fibrosis (CF). Together, we can ensure children with CF like five-year-old Oliver can look forward to a brighter future.

Here's a look at aging with CF from someone aging with CF – but didn't know she had CF.

A CF Diagnosis at My Age? I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.