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Hi Everyone,

Question- Has anyone advocated to have a Clinical Study implemented? Last

night I was both surprised and disappointed when I visited the NIH website and

could not find any clinical studies now or in the past. I would be thrilled to

hear any stories! My 16 month old daughter was recently diagnosed and I

can't imagine going through this for approx. 5 more years with only steriods

(which we don't plan to try), tylenol and motrin to rely on.

I emailed the Research Dept at Children's Hospital of Philadelphia this morning

to inquire into the possibility of a clinical study. Does anyone care to join me

in an emailing campaign? If so, let me know and I will post the email address.

I told before I left work this morning that mommy was going to kick some

but today! lol..

Thanks,

Jen C.

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