AdvocacyAlternative MedicineLiving With CFResources

Cystic Fibrosis and Menopause

– Written by Aoife P. R. 28 and Menopausal Okay, so you’re probably wondering why I’m writing about this topic at such a young age. You’re probably thinking, “What could this young person possibly have to tell me about this latter in-life hormonal change?!” And that’s fair, I mean I …

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AdvocacyLiving With CFResources

Why People With CF Need to Know About HPV

– Written by Aoife P. R. My Experience with HPV + Cervical Cancer As some readers may know from my previous posts, I was diagnosed with Cervical Cancer at just 27 years of age. This was a total shock my family and I at the time, as having CF kind …

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AdvocacyAlternative MedicineLiving With CF

Surviving Through the Pandemic Isolation in Ireland with CF

Saying Good-Bye to One Emotional Roller-coaster… January 2019. Fatigued, emotional, drained, fragile but eternally grateful, I was ready to take life by the horns as I had just finished 25 sessions of radiotherapy. It had been an extremely tough 10 months, having to leave my new home, job and friends …

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Advocacy

Jillian needs a kidney! Type O

Meet Jillian McNultey, our latest Team Member!  Jillian NEEDS a KIDNEY! Listen Here: THANK YOU to all those who like former team member Dr. Corey Nislow, Gave the Gift of Life and DONATED a KIDNEY Listen here for Corey’s Story: http://https://youtu.be/j_c5p_VdRiY And to those researchers at Langone Hospital in NYC …

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AdvocacyLiving With CFNews & EventsSocial Media

Roche Virtual Summit Lauren Brenneman speaks Innovation and the CF community

Lauren Brenneman of CFTEchnology speaks about the mission of patients to take charge of their data at the Roche Virtual Summit Patient Panel

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AdvocacyGeneticsResearch

Cure-E-Us: Imogene at the World Orphan Drug Conference 2018 Part 1

World Orphan Drug Conference 2018, April 25-27 (Part 1) Getting to the Conference! I drove from northern NJ …5 hours along the tiresome NJ Turnpike, over the Delaware Memorial Bridge, through Delaware which seems like the wink of an eye and then through Maryland, only to get confused…is it 695,95, …

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AdvocacyAlternative MedicineGeneticsLiving With CFSupplementsTreatments

A New Hope for CF! (Planetary Biosciences Review – Jan 2018)

To brighten this post up, I will review the exciting supplements Indrepta and TauriNAC using Star Wars parlance… I’m a 46 year old CFer with my original lungs, living in London, England. Following a virus in November last year, the Phantom Menace of mucous was giving me a hard time …

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AdvocacyLiving With CF

Getting paid for all the work it takes being a patient or caregiver with Cystic Fibrosis

You never do. Instead, other people get paid for your work: all the treatments: meds and trials, devices, hospitalizations, doctors and health care providers. BUT Perhaps you don’t care…this is the system that has worked since the Hippocratic Oath came into being, declaring the doctors at the helm. Through the …

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AdvocacyGeneticsLiving With CFResearch

A letter from Dr Corey Nislow – the obligation to change the way research is done

Dear CF community, My name is Corey Nislow, I am a 51-year-old academic researcher who has spent the last 30 years studying how genes affect traits. For a bit of my background you can find me here: www.creativedestructionlab.com/people/corey-nislow/ and here scholar.google.ca/citations?user=n1e6LlcAAAAJ&hl=en . My reason for writing is simple. Just over a …

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AdvocacyLiving With CFResearchSurveyUncategorizedVideo

Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!

We hope you agree! Tell us what you think..Be Counted! Take the SURVEY NOW! Video by Lance 2020 ~ 1 minute Survey: 9 minutes

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