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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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ABBVIE Scholarship Awards Voting
AbbVie Kicks Off Two-Week Public Voting Open for the 2021 AbbVie CF Scholarship Thriving Student Awards
Aug 23, 20213 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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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
1,057 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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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
1,241 views
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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
1,882 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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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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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
430 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
364 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
867 views
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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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