Category: Adventures of Galacto Girls
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“What About Us?” – Galactosemia Community
A few days ago, I asked for anyone who might know a local doctor who would be willing to take over the management of the investigational drug Francesca is on. We learned that the company that bought the medicine was ending the Expanded Access Program (which has allowed access to the medicine after the clinical…
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This is Galactosemia
Two seemingly opposite things can be true at the same time. A situation can be incredibly difficult, devastating even, but also a beautiful blessing. I can grieve a life I once imagined that will never be while also being incredibly thankful for the life I get to live every day. I wouldn’t have picked this…
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Clinical Trial Update, Funding Cuts, Glow for Galactosemia and more
Last November our galactosemia community held our breath while we waited for the FDA to make a decision about Govorestat, the clinical trial drug Francesca is on. An approval would mean we would have the first ever treatment for our community – not a cure, but a treatment. A step in the right direction. A…
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A Letter to Myself – July 15, 2014
This is the time of year when Timehop and On This Day Facebook memories and pictures bring back the sadness, fear and uncertainty we experienced three years ago. We still face uncertainties including possible learning disabilities (yes, I know she’s doing great now – but the galactose will continue to build up in her body…