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COVID-19 Data Dump Delivers Good News for Cystic Fibrosis Population

  • 30. Apr. 2020
  • /
  • Coronavirus, Today in Medicine

One of the benefits of having cystic fibrosis (if there was ever such a thing…) is that it is quite easy for our clinics to report, collect and analyze patient data all over the world. The Cystic Fibrosis Patient Registry (despite some of my issues with it) has the ability to quickly collect data allowing...
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Making Progress Towards Addressing Discriminatory Triage Guidelines

  • 16. Apr. 2020
  • /
  • Coronavirus, Health Policy

I write with good news! Our pleas have been heard and some of the discriminatory policies or proposed policies that explicitly list cystic fibrosis in triage guidance are being challenged or have been reviewed. I have updates from Wisconsin, Vermont and finally a national position from Cystic Fibrosis Foundation. It is CRITICAL we continue to...
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Darcy’s Blog: Fertility Treatments, COVID19, the Salem Witch Trials, and Finding Nemo

  • 15. Apr. 2020
  • /
  • Coronavirus, Guest Column

Darcy is back on the blog! Fertility treatments are one of those elective procedures that have been canceled because of the pandemic. It makes sense, of course, but it’s one of those crazy domino effects of the virus. It’s weird to think that there will be different children born at different times because COVID19. I’m...
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People With Cystic Fibrosis are NOT Expendable

  • 11. Apr. 2020
  • /
  • Coronavirus, Health Policy

Are we living in a world that is not adequately valuing our lives? We might be. Within the context of triaging care, our society is discovering that some of the very worst policies imaginable are still on the books. “Policies and guidelines in five states — Alaska, Florida, Oklahoma, Vermont and Wisconsin — specify that...
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Your Cystic Fibrosis Experience Will be Enormously Valuable in the Post-Pandemic World

  • 09. Apr. 2020
  • /
  • Coronavirus, Health Policy, In My Experience

We are infection control experts. Don’t miss your opportunity to take a leadership position in your community as people start to adjust to the new normal. Yesterday I listened to Dr. Antony Fauci – the man who is proving to be our national hero when we need one – in an interview on the Wall...
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One Month in Self-Isolation: Stress, Calm and One Big Question, Productivity?

  • 03. Apr. 2020
  • /
  • Coronavirus, In My Experience

Today is my one-month anniversary for being in self-isolation. Some days I wake up feeling like that time has flown by. Other days it feels like this past month has been the longest decade of my life. At the heart of the month I have been in isolation is my routine, the daily cystic fibrosis...
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Patient Privacy and the Pandemic: Where Do We Draw the Line?

  • 30. Mar. 2020
  • /
  • Coronavirus, Health Policy

Medical security is one of the most fundamental rights offered to patients and the medical system. Patient privacy is why I often omit or generalize different medical details about my own life within these blogs. I don’t write about PFT scores, test results and things like that. It’s also why I never tried to track...
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G17Esiason

Saved by science 🧬 Patient advocate 🫁 Dad 👶🏻🐶 @BostonCollege ‘13🦅 @TuckSchool ‘21🌲 @Dartmouth TDI ‘22🌲#cysticfibrosis

Hanover, NH

Jan 31 12:00

@CPC303 Hope cars are flying by then!

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Jan 31 12:00

31 is getting out of the car after a four hour ride and feeling worse than I used to after an hour in the gym.

Reply
Jan 31 12:00

RT @cysticfibrosis: Great day in Nashua, New Hampshire for the DCU for Kids outing. The 19th year benefiting BEF! @G17Esiason @7BOOMERESIAS…

Reply
Jan 31 12:00

It’s an obvious step in the life cycle of small molecule drugs like branded Kalydeco. The same will happen for Orka… https://t.co/X7jB2rbONJ

Reply

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2022 Reading List

Alexander the Great - Anthony Everitt
Leonardo da Vinci - Walter Isaacson
Priced Out - Uwe Reinhardt
The War That Made the Roman Empire - Barry Strauss
The Winter Army - Maurice Isserman
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Latest Podcasts

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  • State of Health Episode 22: Pharmacy Benefit Managers (PBMs) and Their Hidden Role in Drug Pricing November 10, 2021
  • State of Health Episode 21: Antibiotic Resistance: How CARB-X Helps New Companies Get a Running Start October 13, 2021

Latest CF Around the World Blogs

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  • Cystic Fibrosis Around the World: Morocco January 6, 2021
  • Cystic Fibrosis Around the World: Turkey September 30, 2020

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DISCLAIMER

*Nothing contained in these blog posts, podcasts, images, or any other posts should be considered medical advice. Such advice can only be given by a physician who is experienced with cystic fibrosis. The contributors on this blog/podcast cannot be held responsible for any damage which may result from using the information on this blog/podcast without permission of their medical doctor. Furthermore, the views expressed on this blog are solely those of the contributors and do not represent the views or opinions of the writer’s employer(s) unless explicitly mentioned.

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By submitting this form, you are granting: Boomer Esiason Foundation, 483 10th Avenue, New York, New York, 10018, United States, http://www.esiason.org permission to email you. You may unsubscribe via the link found at the bottom of every email. (See our Email Privacy Policy for details.) Emails are serviced by Constant Contact.

DISCLAIMER
*Nothing contained in these blog posts, podcasts, images, or any other posts should be considered medical advice. Such advice can only be given by a physician who is experienced with cystic fibrosis. The contributors on this blog/podcast cannot be held responsible for any damage which may result from using the information on this blog/podcast without permission of their medical doctor. Furthermore, the views expressed on this blog are solely those of the contributors and do not represent the views or opinions of the writer's employer(s) unless explicitly mentioned.

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