Category Archives: Research and Fundraising

CF Conference

Today is the start of this year’s North American CF Conference. One of the great things about technology is that you can experience important events like this, even if you are unable to physically be present. If you’re interested to … Continue reading

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Cleveland Clinic Visit

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. ~John 14:27 We traveled to Cleveland Clinic this past week to … Continue reading

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Cystic Fibrosis is going down

On July 18th, Vertex Pharmaceuticals announced positive early study results for next-generation CFTR modulators. Why is this exciting news? Because this is what many of us with cystic fibrosis have been waiting for: a medicine that will treat the underlying … Continue reading

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Over 7 months of Indrepta and now Taurinac

I’ve been taking the CF supplement Indrepta for over 7 months now. You can read about this supplement here. There are now 3 versions of Indrepta available. On November 26, 2016, I began taking Indrepta A for a couple months. I … Continue reading

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Emily’s Athletes Final #

Thank you for your support this year. Team Emily’s Athletes raised $11,260 for cystic fibrosis research and drug development in 2017! We are so thankful to everyone for their generosity in supporting this cause.

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Team Emily’s Athletes 2017

May is Cystic Fibrosis Awareness month. Walking in the Cystic Fibrosis Foundation’s Great Strides walk is one of the things that Jim and I do each year to raise awareness about cystic fibrosis and support the effort to find a cure. … Continue reading

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Cystic Fibrosis Advocacy Day

Today, for the 2nd time, I was able to participate in The Cystic Fibrosis advocacy day at the Massachusetts State House set up and hosted by the Cystic Fibrosis Foundation. Similar advocacy days are taking place at numerous sites around … Continue reading

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30 days on Indrepta

So I’ve been taking the CF supplement Indrepta for just over 30 days now. (I’m taking the recommended dose of 3 capsules, 3 times per day.) Overall, I’ve had a positive experience with this supplement. I haven’t experienced drastic symptom improvements … Continue reading

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Indrepta

I’m receiving a delivery in the mail tomorrow that I’m pretty excited about. It’s a new supplement called Indrepta developed by the Sharktank Research Foundation. If you’re interested, check it out: I’ll keep you updated.  

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Climb For a CF Cure Update

We’ve been climbing since January 2016, with a goal to climb 31,200 FLIGHTS of stairs before we ring in the new year. We are determined to see cystic fibrosis stopped in its tracks. Our team, Emily’s Athletes, raised a total … Continue reading

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