What else the Walkathon funds will cover

[Guest guest]

Hello all again -

I wanted to also write about what else the Walkathon funds will

cover for our RSS/SGA division.

1) From the funds last year plus some from this year's walkathon,

we will be issuing a grant to Dr. Harbison, to hire additional

statistician/writer hours to enable her to complete 1, possibly 2,

studies for publication by the end of 2006.

2) In addition, Doctors Harbison, Stanhope and Toumba (Stanhope's

fellow whom many of you met at the convention) are joining with me

to write and implement a comprehensive survey of RSS children via

their parents. From this data, we will begin with publishing

article #1, which Stanhope believes will be the most impressive RSS

article to come out in years. Yahoo!!!!

The tentative hypothesis is to describe the various physical

features and functional abnormalities common to children with RSS.

We will show what we find to be similar to prior studies, but also

delve deeper -- discussing GI complications, hearing loss, and

higher incidences of learning disabilities, ADD/ADHD and PDD/autism.

In the end, we hope to actually provide a set of diagnosis criteria

for which non-maternal UPD7 children should be able to be diagnosed

with RSS. Meaning in a briefer format, 90-95% of children with RSS

should have, for example, 5 of 6 of these defined characteristics.

At this convention, it was mind-blowing the number of children who

came to the convention with " possible RSS " for which they clearly

did not have RSS. All had some of the characteristics, but not the

majority of the " cardinal " characteristics. Many of these children

were indeed SGA -- so the fact is that the treatment is the same.

But a handful were not SGA and not RSS, which can be heartbreaking

to the parents to be told their child does not have RSS. Then why

is their child not growing well????

Hopefully, this first study we produce will actually be useful!!!

Anyway. In order to finish the Guidebook, make the grant to Dr.

Harbison, and produce this survey and finish the first study, we

need to raise $38,000 more (which means $75,000 in Walkathon, as 50%

of the monies from the Walkathon go to MAGIC for the Convention

costs).

I hope you all can help!!! This month alone we paid for the

videotaping of Dr. Chernausek and Dr. Czernichow's presentations at

the convention ($2,200 from our Educ & Research Fund).

Every donation to this fund helps our division continue to educate

all of us (parents) and physicians about RSS and SGA. Thank you to

all of you who are helping us. We all need the information and

advice, but we can't get it without raising the money to pay for all

this.

Thank you for listening!!! Salem and Katy Frissora, MAGIC

Foundation, Current volunteer RSS/SGA division directors