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USACFA blog
We feature blog posts about a variety of topics related to life with CF. If you would like to write a blog, send us an email at blogs@usacfa.org and we will get back with you as soon as possible. If you are looking for our blogs from our previous site, click here and you will be directed to the page. As always, click here to subscribe so you don't miss a publication or a blog post.
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Join FamilyCon -The CF Virtual Event
For those of you who don’t know FamilyCon which is being held this year on Thursday,
June 18 from 7-11 PM Eastern Daylight Time and Saturday
Jun 12, 20202 min read
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Finding Comfort & Opportunity in Social Distancing
Although this period of COVID-19 has been both challenging and awkward, I have found it to be an opportunity to take a breath and enjoy what
May 18, 20204 min read
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New Laws to Address COVID-19: PART IV of IV
The other significant development from the Families First Coronavirus Response Act (“FFCRA”) is the creation of the Emergency Paid Sick Leav
May 6, 20204 min read
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New Laws to Address COVID-19: PART III of IV
On March 18, 2020, Congress adopted the Families First Coronavirus Response Act to help individuals who may need leave from work because of
May 6, 20205 min read
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How Having CF Helped Me Understand My Sexual Orientation
How I choose to express myself—my internal sense, mannerisms, and behaviors—are influenced by the things I cannot change. There is nothing I
May 4, 20203 min read
1,177 views
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Transplant Story: Conquering COVID-19
Nobody was allowed to be there with me due to the “no visitor” rule. In communicating with my loved ones, I had to release them from their a
Apr 29, 20204 min read
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Six Weeks into the Lockdown: Managing the Normal and the Unexpected
A few weeks ago CF Roundtable interviewed Francesco Longo about his experiences living in lockdown in Italy in the early weeks of the COVID-
Apr 19, 20204 min read
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New Laws to Address Covid19: PART II of IV
Coronavirus Aid, Relief, and Economic Security Act (“CARES” Act)
adopted by Congress on March 27, 2020.
Apr 17, 20204 min read
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New Laws to Address Covid19: PART I of IV
Coronavirus Aid, Relief, and Economic Security Act (“CARES” Act)
adopted by Congress on March 27, 2020.
Apr 16, 20205 min read
932 views
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A Triumphant Transplant Testimony
This month we’re celebrating Donate Life month by highlighting personal stories of those with transplants. One of our directors, Lara Govend
Apr 14, 20206 min read
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Apply for the AbbVie CF Scholarship
AbbVie invites students with cystic fibrosis to apply for the AbbVie CF Scholarship for the 2020-2021 academic school year
Apr 9, 20203 min read
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Thanks to Trikafta, I Beat COVID-19
Finally, five days after COVID-19 testing, I had an answer. Upon hearing “your test is positive,” my heart started pounding and tears slowly
Apr 8, 20204 min read
1,478 views
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Fighting CF with Family and Friends
During this pandemic, many of us are experiencing a shrinking of our social support
networks so that only a handful of family, friends, and
Mar 26, 20204 min read
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My Experience As One of the Only CF Patients Battling Covid-19
She had come in to tell me I tested positive for Covid-19. I was absolutely terrified. I’ve spent time online like everyone else, and all I
Mar 19, 20206 min read
27,746 views
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CF and COVID-19 in Seattle
That clinic day, at the University of Washington Hospital & Medical Clinic, things looked different the moment I walked in. The mask & hand-
Mar 16, 20204 min read
1,090 views
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Q&A: COVID-19 and a quarantined CF patient in Italy
Despite the news speaking of quarantine, it’s not exactly that. It’s more akin to an economic and social lockdown. People can still leave th
Mar 13, 20209 min read
9,109 views
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No One Should Be Left Behind
Back in 2011, the collision of hope and desperation led my family, friends and I to start Emily’s Entourage (EE). We saw life-changing advan
Feb 27, 20204 min read
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Research Corner: Translate Bio Recruiting Class 1 and Nonsense Mutation Patients
for those who have two nonsense or class I mutations, and no current modulator options, the feeling of being left behind is unmistakable
Feb 18, 20203 min read
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The Harvest: Transitioning to life with Trikafta
Months went by of agonizing impatience. My paperwork funneled through hundreds of bureaucracie, shuffling through the hands of one cog in th
Feb 1, 20207 min read
1,178 views
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Cf: My Current Fear
Being diagnosed with a terminal illness at 18 years old is terrifying. Two weeks ago, I turned 31 and I am having a very difficult time acce
Jan 29, 20203 min read
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