Convention '04: Some thoughts and a request

July 26, 2004

Hi,

The last 5 days were pure " magic " . I wish I could have bottled the

energy, caring, excitement, joy, humor, knowledge and sharing that I

personally felt as I experienced the convention. It felt wonderful

to " be back " . Above all, I will always treasure the faces of each

and every RSS child I met!

Thanks to all of you who helped out in so many ways. and I

rely sooooooooooooooo much on the tremendous spirit and generosity of

all the volunteers. (Also, thanks to the person who pointed out to

me that you can't spell " fRiSSora " without RSS. hah!)

What a weekend. We learned about feeding techniques, insulin

resistance, adrenarche and puberty implications to growth in an RSS

child, diagnosing RSS, the importance of height to weight ratios,

interpreting growth charts, ADD, what it is like to be an adult with

RSS, what a fundoplication is all about, the bottom line on reflux

meds. Some of our kids received advice from Dr. H....others received

dental advice from Dr. . Some of you saw Storm demonstrate a

gHT injection. We all came home with freebies and goodies from the

exhibitors (gotta love Ben and Jerry's Cherry ). And much,

much more! We'll be writing more in the MAGIC newsletter. For now, a

few requests.

(1a) If you took notes at any of the presentations and have typed

them in, could you please share them with me?. They will help me as i

write the summary section of the newsletter (rss2katy@...).

(1b) Along those lines, we would love to add family quotes to the

newsletter. Please share what you feel were the 1 or 2 most valuable

things you learned or experienced. PLEASE SEND TO MY EMAIL ADDRESS

BY THIS FRIDAY, 7/30!!

(2) We'll be sending out a feedback form in the next few weeks.

Please keep a look out for it and send it in when you get it. We'll

be asking not only for feedback on the Convention itself, but also

ways MAGIC can better serve its RSS families.

All for now..

Thanks again for all your warm wishes and hellos.

Katy

-----------------------------------------------

Katy Frissora

Mom to (RSS), age 7.5, gHT since 3.5

MAGIC RSS Division (Co-Director)

rss2katy@...

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