Tag Archives: creating hope

Armand’s Big Day

I’ll keep updating this post as the day goes on and we talk to more doctors before or after each procedure he’s having today. First he’ll have an MRI, then up to the OR for his lumbar puncture, and eye … 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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FDA Safety and Innovation Act (was: Creating Hope Act) signed into law today

From Yahoo: WASHINGTON, July 9, 2012 /PRNewswire-USNewswire/ — Signed by President Obama today, theU.S. Food and Drug Administration (FDA) Safety and Innovation Act includes the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983. As the long-standing … 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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Creating Hope Act: Make Your Voice Heard [UPDATE]

In doing some research on the House and Senate versions of the Creating Hope Act of 2011, neither bill has moved since the bills themselves were first brought to my attention nearly a year ago. The House version of the … Continue reading

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