Blog

How Emily’s CF Journey Changed My Perspective on Health

Posted by on Aug 12, 2014 in Blog, Emily's Entourage Blog | 0 comments

We are thrilled to share a blog post from Bea Abbott, a close friend of Emily’s and the entire Kramer-Golinkoff family, as well as a special source of support and spirit for all of us at Emily’s Entourage! Thanks, Bea!   I am 22 and in college, and like most 20 somethings, I recently had my wisdom teeth out. I know, everybody does it and rarely does anything ever go wrong but nonetheless I was terrified. Though my seldom health issues, if I can even call them that, have...

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George Washington University Blog Features Emily’s Entourage TEDMED Great Challenges Discussion

Posted by on Jul 15, 2014 in Blog, Emily's Entourage Blog | 0 comments

Emily’s Entourage was thrilled to be featured in a blog post recapping Emily’s recent TEDMED Great Challenges discussion. The post enables Emily and her fellow panelists’ to share their important message about how to best cultivate and assess patient engagement with a greater audience, and we are excited to share it with you here! Below is a guest blog post from Emily Newhook, community relations manager for the Executive Master of Health Administration program at the Milken Institute School...

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EE Reflects on the Past…and Looks to the Future…

Posted by on May 27, 2014 in Emily's Entourage Blog | 0 comments

As another successful CF Awareness Month comes to a close, all of us at Emily’s Entourage are taking a moment to reflect on how far we’ve come…… When we pressed “send” on our very first fundraising email, we weren’t sure what donation goal to set or how high we could let our dreams soar. Thanks to your incredible support, in less than 3 years, we have raised over $650,000! That number simply astounds us! Not only because it represents tangible progress towards life-saving research, but also...

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Emily’s “Bucket List” of Life Dreams

Posted by on May 19, 2014 in Blog, Emily's Entourage Blog | 3 comments

In my 29 years with CF, there are still so many things I don’t understand about this crazy disease, but if there’s one thing I’ve learned, it’s that uncertainty is CF’s hallmark characteristic. Lung infections that force you to put your whole life on hold can pop up without any warning and disruptions become par for the course. It’s liberating on the one hand, as it forces you to live in the present and not bank too heavily on planning for the future; but it’s also a cruel reminder of CF’s...

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May is Cystic Fibrosis Awareness Month: Spread the Word

Posted by on Apr 30, 2014 in Blog, Emily's Entourage Blog | 0 comments

Emily’s Entourage is proud to participate in recognizing the month of May as National CF Awareness Month. This is a great time for EE to work alongside the CF community to bring national attention to this devastating disease and the progress being made toward a cure and control. We’re calling on all Entourage members to take action in honor of CF Awareness Month. Here’s what YOU can do to help: SPREAD THE WORD Follow and participate in the EE Instagram campaign and share updates from the EE...

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Emily Answers 24 Questions About Life and CF

Posted by on Apr 30, 2014 in Blog, Emily's Entourage Blog | 0 comments

Emily’s Entourage is pleased to have this month as an opportunity to shine the light on CF and on our efforts to combat this devastating disease. An awareness month is typically meant for educating the general public about a disease; but for CF, we know it’s really not about a disease at all.. it’s about people — 70,000 of them, to be exact. People who love cupcakes and hate pink, who have weird, quirky obsessions and pet peeves, and who are just like everyone else… and just...

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