A post to www.ACOR.ogr from a fellow NB parent:
I think the idea of a parent advocacy group, well coordinated so that no one is working at cross purposes, is a fabulous idea. 99% of the leading nb docs just will not step outside their own self-made nb boxes. And our children are dying because of it.
Years ago I spoke with Professor Ronald Breslow, the developer of SAHA, and he was convinced that it would cure Bryan. Maybe he was right, maybe he wasn't, but we didn't get the chance to find out because of the archaic trial process. Adults first for several years, then MAYBE pediatrics. It's an outdated system and it needs to be changed. With the communication support of the internet and the research capabilities of parents like you & John I'm sure that a group of parents on a mission, well armed with facts & data, can have an impact.
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