I know I am incredibly fortunate to have such a great support system behind me. It is not a universal trait, but I think it’s something that all people with CF deserve. I hold my support system to a very high standard. I have a short fuse for people in my life who are generally...
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Last week I blogged about applying to college, but what happens when you get in? The short answer… a lot. You likely have experience with the disabilities process throughout high school and standardized testing via a 504 plan, but college can be a different animal entirely. Most universities have a disabilities office, which serves to...
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I think it’s quite common for kids with cystic fibrosis to dedicate part of their college applications to their lives with CF. I think it’s a great subtopic because it’s who we are! So, as the next wave of kids with cystic fibrosis closes up their junior years of high school, prepares for senior year...
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I am reblogging this article that I wrote for Emily’s Entourage, which originally appeared HERE. What is Emily’s Entourage? “Emily’s Entourage accelerates research and drug development for nonsense mutations of Cystic Fibrosis. By providing critical leadership and coordination, Emily’s Entourage drives high-impact research, cultivates multi-stakeholder collaboration, and facilitates information exchange to speed breakthroughs. [Their] goal...
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Shifting age appropriate responsibilities from the parent to the child always seems to be a difficult task for cystic fibrosis families. It’s a slow methodical process that seems to work at a snail’s pace. I think it’s due in large part to the dreaded drop that many young adults are forecasted to face. This week...
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