Actually need advice from anyone!

[Guest guest]

In actuality, anyone who might want to come to next summer's

convention can respond -- I just was afraid that if you hadn't ever

attended, you might be confused by the email, trying to understand

what I was talking about....

> This email is for anyone who attended the MAGIC convention this

past

> summer. We were going to be asking you to fill out a survey, but

it

> has been delayed as everyone in Katy's family has had the flu.

>

> I need to ask your advice. Right now, we have invited Dr. H and

Dr.

> Stanhope to speak again together -- have not heard back from

> Stanhope.

>

> We also hope to receive an acceptance from Sir Barker, the

> epidemiologist from England who published the HUGE study on health

> risks as adults (the big insulin resistance study) for adults who

> were born SGA as babies. If he can not attend, we want to have

> someone speak to insulin resistance.

>

> We also will be having a GI doctor (probably Dumont) and Dr.

> Spigland, the peds surgeon from new York who has been doing all

> these special pyloroplasties, etc. with Dr. H -- they will be

> speaking on the common gut dysmotility problems that RSS and SGA

> kids have (they will also speak to any of the latest studies that

> they are doing). These speakers have confirmed and are coming.

>

> The sad news is that we really wanted to offer the nutrition talk

> and extend the feeding therapy practical hands-on tips for an

extra

> 2 hours, but both of the Easter Seals feeding therapists can not

> attend. We may have to hold off until the following year.

>

> We also are going to have a session on the Practical Adjustments

> that have to be made to live as a short-statured adult. The RSS

> adults will be present on a panel, some of their parents, etc. -

and

> hopefully a moderator. Katy came up with a great idea of having a

> slide show from the RSS/SGA teens and adults.

>

> We are also going to have a session on Marriage and Family --

living

> with a " chronically ill " child. A psychologist will be leading

this

> one, and it should be really good.

>

> So.... the question is... what else??? Especially if we have to

> remove the Nutrition/Feeding Therapy sessions. What is important

to

> you all? What are we missing?

>

> Dale gave us a contact to have a speaker on ADD-ADHD, and

we

> are going to do our best to arrange that speaker.

>

> Let's see what else. We hope to do the pool party again. And

this

> year, I am rooting for a " Teen Room. " I want to set aside a room

at

> night for the teens to hang out, we'll rent a foosball table, TV

and

> X-Box, ping pong table, order pizza in, etc. Cross your fingers.

>

> The RSS adults hope to have a big turn out as well.

>

> Oh, and we hope to have a " decompensation " room -- a quiet room

> where parents can come and there will " experienced " RSS parents

> there who can help you decompress what you just heard in the

> sessions.

>

> What other presentations would you find helpful??? The open

> presentation spots are basically 90 minutes long. Katy and I have

> to have EVERYTHING nailed down no later than November 8th, when we

> fly to Chicago for a division director meeting. That is just 4

> weeks away, yee gads.

>

>