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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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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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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AdvocacyFinancialLiving With CF

Equal Access to Treatment for All with Cystic Fibrosis in the US?

Just in from Tamika Grubbs: Cystic Fibrosis is the same disease for at least 30,000 people in the united states and approximately 70,000 worldwide, but depending on where you reside and what insurance you have there could be big differences in your access and quality of care. I am a …

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The Unidos pela Vida Institute – spreading knowledge about Cystic Fibrosis in Brazil

Join us today as we learn more about the Unidos pela Vida Institute for Cystic Fibrosis in Brazil. Thank you to Verônica Stasiak and Pamela Mazini Stürmer for supplying us with the below information, translated to English. We wish them good luck with the great work they are doing to spread awareness …

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