Tag Archives: rare disease day

Charmed, I’m Sure

My family and I are attempting to start a larger-scale charitable organization based around helping fund research into treatments and cures for rare diseases, and helping parents, patients, and family members find these treatments.  The organization will be called the … Continue reading

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Riding Solo

Longtime readers may note that Armand and I used to engage in “cookie nights”, where I would open a box of Soft Batch Chocolate Chip cookies, and he would systematically claim most of the cookies for himself by simply taking … Continue reading

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Notes, Quotes, and Billy Goats

There was (maybe still is, I’m not sure) a sports columnist for the local newspaper by the name of Gary Nuhn. Fairly unremarkable, sort of a homeless man’s version of Rick Reilly, he had an occasional column that he called … Continue reading

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Creating Hope Act: Further Updates

The Creating Hope Act was folded into a larger piece of legislation, the FDA Safety and Innovation Act.  The bill passed the House last week, and last night was passed by the Senate, and is expected to be signed by … Continue reading

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