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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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How Mom Dealt with my CF Diagnosis (Part II)
Doing this interview with my mom stirred up memories that both brought out sappy tears and made us laugh. While we have had our differences,
Jun 2, 20214 min read
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Research corner:Cystic Fibrosis Phage Therapy Study at Yale
Phages are specialized viruses that kill specific bacterial strains. They are found abundantly in the environment and are the natural predat
Jun 1, 20213 min read
310 views
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How Mom Dealt with my CF Diagnosis (Part I)
By Sonya Ostensen SO: Since May is the month we honor our mothers, I began to reflect on what my mom went through after learning about my...
May 26, 20214 min read
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Research Corner: Alcresta’s RELiZORB is the only FDA approved enteral feeding EnZyme
How does RELiZORB work?
Inside the cartridge is a digestive enzyme called lipase, which is attached to the small white beads that you can s
Apr 7, 20213 min read
1,058 views
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American Rescue Plan Act Helps With Insurance Premiums
By Beth Sufian, J. D. On March 12, 2021, President Biden signed the American Rescue Plan Act (ARPA) enacted by Congress. The $1,400...
Mar 30, 20215 min read
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Fighting CF In Sub-Saharan Africa
By: Mark Tremblay As someone diagnosed with CF 50 years ago when patients slept in mist tents and weren’t expected to live to the age of...
Mar 24, 20215 min read
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AbbVie Calls on Students with Cystic Fibrosis to Apply for the AbbVie CF Scholarship for the 2021-20
• National scholarship awards $3,000 to 40 exceptional students living with cystic fibrosis (CF) for academic excellence, creativity and...
Mar 21, 20213 min read
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Research Corner: Encala™ - A new medical food for treating malabsorption
There is a new product called Encala, created by Envara Health, which is the first medical food formulated specifically to help people with
Mar 11, 20214 min read
1,242 views
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The AFFORDABLE CARE ACT: New Pathway to Coverage
During this special enrollment period, individuals may enroll in health coverage which will become effective...
Mar 7, 20213 min read
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A New Alternative for Pancreatic Enzyme Replacement Therapy (PERT)
By Ella Balasa Many in the CF community have experienced weight gain to some degree since starting modulator therapies in the last few...
Jan 25, 20215 min read
1,883 views
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Online Options Give Power To People With Disabilities
The first time I ever did school remotely was in sixth grade when I was in the hospital for two weeks due to a CF exacerbation. School had a
Jan 11, 20214 min read
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New Treatment for Lung Transplant Recipients Experiencing Chronic Rejection
Lung transplantation brings much hope to individuals battling severe lung disease with cystic fibrosis. However, long term prognosis is vari
Nov 18, 20203 min read
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Becoming a Filmmaker with Cystic Fibrosis
Becoming a filmmaker has been a confusing journey that began with an abrupt entry into adulthood. The summer I graduated from high school an
Nov 10, 20204 min read
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Back to the Familiar Two-Step
Most people with CF know what I mean when I say that I feel like I am in a perpetual loop of one step forward, two steps back. And, sadly, i
Nov 4, 20203 min read
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Getting a second opinion for your CF care
One of the great benefits of working in biotech was seeing firsthand how differently physicians can treat the same disease. Most Americans a
Nov 1, 20204 min read
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Respecting Self and CF with Time Management and Healthy Boundaries
When I was asked to join the Board of USACFA earlier this year, I ardently wanted to say “yes”. But I paused first and asked questions. Sinc
Oct 26, 20204 min read
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Research Corner: Zero Percent Left Behind – Eloxx Pharmaceuticals Nonsense Target Therapy
The treatment advances for our community in just these short few years have been phenomenal. But sadly, as we know, not all of us have been
Oct 20, 20204 min read
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IMAGINE IF: Being a Middle-Aged Black Male Anomaly with Cystic Fibrosis
“Imagine If” you were born a healthy-looking black baby boy who is alert, bubbly, and full of energy. A bundle of joy who is proudly held by
Jul 28, 20204 min read
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Marathon Training with CF
Next, I set larger goals for myself. I wanted to keep growing and developing this habit of exercise. I took on the challenge of running a 10
Jul 22, 20203 min read
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A Glimpse Inside Our World: Striking Parallels between Life with CF and COVID-19
By: Emily Kramer-Golinkoff In March, as COVID-19 was ravaging our world, I could not help but be struck by some of the parallels between...
Jul 13, 20204 min read
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