Laurie Botwin's Blog – December 2008 Archive (2)

Petition for Deflazacort FDA approval

I found this while searching the web for information on Deflazacort. I wanted to post the link to this petition here so that others may sign it and send it along to anyone you know so we can really make this a HUGE drive. I am currently trying to contact the originator of the petition and so far have not had any luck. I will pick up where he left off if I cannot track him down. Everyone, please have a look at what Adam wrote and then sign it if you feel comfortable. I was number 124 and by… Continue

Added by Laurie Botwin on December 12, 2008 at 1:24pm — 2 Comments

Learning

Tomorrow is Ben's first neuromuscular clinic appointment. I made a list of questions to ask this doctor. Funny thing is, I don't expect any answers. We have been told that our local hospital is not the place to seek care. We couldn't get an appointment for the better place until April and won't go to Cincinnati until March. I feel like PPMD has been my "clinic". I have learned so much here. I have learned that I need to be the vocal minority to ensure Ben gets what he needs. I have learned that… Continue

Added by Laurie Botwin on December 10, 2008 at 4:25am — 3 Comments

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