My timelines are on fire with the wonderful news out of the North American Cystic Fibrosis Conference that Median Predicted Survival in cystic fibrosis has been raised to 50 years old thanks to a hell of a lot of progress that our condition has made over the past several years. It’s not lost on me...
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Just this afternoon, much of the CF Community became aware of a cystic fibrosis and COVID-19 outcome study in Respiratory Medicine. The article was published back in September, but it’s making the rounds on social media today. This study is of serious interest for our patient community because, at its core, it is really the...
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It feels funny writing about this. Maybe it’s my new normal – hopefully it is! Last year I wrote about hitting the one year free of a pulmonary exacerbation milestone. It was the second time I hit it since starting Trikfata (the first came during the clinical trial, but was separated from the second time...
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With each day that goes by, it feels like we are heading straight towards the next chapter of our lives together. Darcy and I have officially started transforming one of the rooms in our home into a nursey (catch my DIY projects on Instagram). My clothes are getting moved out of the closet this week,...
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Venture Philanthropy in biotechnology is as close to a patient-centered investment thesis as there could be. It allows investors and non-profit disease associations working on behalf of patient populations to consider risk, outcome, exit, time horizon, deal sourcing, and non-financial intangibles differently than a traditional venture capitalist. When a non-profit organization engages in venture philanthropy...
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Let’s take a look at my browsing history (No, I don’t subscribe to print newspapers…)! Former New York Giants head coach (and former BC Eagles head football coach), Tom Coughlin, took to the New York Times Opinion column to pen a thoughtful piece about his wife’s recently diagnosed brain disorder, progressive supranuclear palsy. The condition...
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Anytime I hear (or see) someone talking about the Pfizer or Moderna vaccines as if they are experimental, I cringe on the inside. I’d go as far as saying it feels like a slap in the face for anyone who has ever enrolled in a clinical trial. I am one of those people. From 2013...
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