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Re: Sue
Submitted by susie on 29/Nov/2008 in reply to Sue posted by jodi on 29/Nov/2008
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Jodi:I couldn't access your last posts -I don't know why--so I don't know what has been happening with you.
In terms of fund raising--we would love and really need the help. The majority of the funds we've raised so far are from fundraisers from my community. In terms of the amount we need--we need a lot. We're in the process of talking with doctors from 2 different highly regarded major research hospitals right now. The process is agonizingly slow. We are trying to define the scope of the initial study. We know we need more than one research study as there has been next to nothing done so far! It's also difficult because even though FHC is so very important to us, the incidence is low. I believe, personally, the incidence is higher that 200 cases per year--no one has even counted--there is no registry. Thus, we need a lot of money, not just for an initial study but for future one's down the road. My community is pretty much tapped out--it would be wonderful to have fundraisers in other parts of the country.
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