Sharon, others: Study on RSS reprod, etc.

January 12, 2005

Sharon -

In response to " When I brought the " coincidence of similar

gynecological problems " up to someone at Magic, to see if they would

like the information for someone to begin some sort of study, the

response lead me to believe that they didn't know what to do with

the information either...so I just let it be. "

The problem is a simple one. It is heartbreaking, but there is

no " someone " that can begin any study. There isn't any funding to

begin any study on reproduction, or anything else for that matter.

Our division is, bottom line, desperate for two things:

a) volunteers willing to raise money so that we can hire a

researcher. We already have tons of data with DR. H that can be

analyzed; plus we have 200+ RSS families willing to fill out

questionnaires, etc. The problem is that it costs money to run

studies, and we don't have it. We had about 30 families participate

in the walkathon and we raised an awesome $23,000!!!! It is a great

start, and hopefully by Sept of 2005, maybe we can raise the $75,000

that will be required to hire someone.

several volunteers who have professional experience in going

after grant monies. We might be able to approach the manufacturer

of Periactin, for example, to see if they would fund a study.

HA!!! Ironically, we all have been writing lately about how we need

studies to NOT be funded by the pharmaceutical companies. But

sadly, where else do we turn??? Several volunteers might be able to

do some research and investigate other foundations or opportunities

for grants.

c) Several volunteers with business/professional writing skills who

might be willing to contact the handful of physicians who have

published studies on RSS and growth hormone. Although undoubtedly

funded with pharmaceutical funds, etc., because these people may be

familiar with RSS in some way or another, they might be interested

in branching out into another area of study. But we need the

volunteers to take this on.

Can anyone help?

Salem and Katy Frissora

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