Jen Salem is back- 2004 convention

[Guest guest]

Hi! I have gotten back from Mexico, where I celebrated my 40th

birthday by sleeping in, reading lots of books and taking lots of

naps. Arrived home to a literal holocaust here in Southern

California. But no, it is no where near our home -- although it has

wiped out where we ski and camp! There is no such thing as blue sky

in southern california though, and all of our children are not

allowed PE or recess outside at this time, due to the smoke (and

you can imagine how large the entire southern california area is).

We live just 7 blocks from the ocean, so the marine breezes which

blow IN (eastward) keep the smoke from the Simi Valley or San

Bernadino fires from heading westward towards us.

I probably will NOT go backwards in the listserve, simply due to

time. Katy and I have to have all speakers for next summer's

convention confirmed by Nov. 7th when we fly to Chicago for a MAGIC

meeting....

Here is some good news though! ROUGH idea of speakers for next

year's convention....

Dr. Stanhope, reknowned expert on RSS, will come from

England again. He will speak this time on " Clinical Features of RSS

and the Diagnosis " -- also comparing to SGA

Harbison will speak on the Treatment of RSS and SGA.

We have invited Prof. Barker, epidemiologist from England to

speak on SGA and the health risks as an adult. This is the guy who

headed up the massive European study that discovered the link

between adults who were born SGA and the apparent greater health

risks for insulin resistance, and more. He has NOT responded to us

at this time. If he can not speak, we will try and find another

speaker on Insulin Resistance.

In the afternoon, we also will have a presentation on Gut

Dysmotility among RSS and SGA Children. Dr. Spigland, the peds

surgeon who has been working with Dr. Harbison, will be flying out

from NY to speak. And we also hope to have the GI doctor from NY

who has been caring for so many of your children also attend, as

well as Dr. H.

We also plan on having a presentation on the Practical Adjustments

that often need to be made with living as a short statured adult.

The RSS adult group will lead this, hopefully with a specialist who

will lead this (e.g., at what height do you need to have blocks put

on car pedals, etc).

Saturday we have received confirmations from two new speakers. One

is a published author and expert on ADD/ADHD -- Dr. Phelan. He will

speak on that subject -- a subject close to the heart of many of

you. And a psychologist will speak to the subject of Marriage and

Family -- and the impact of having a chronically ill child. How are

siblings impacted; what if one parent wants one treatment and the

other disagrees; what about extended relatives? Etc.

We are praying to find a feeding therapist, to present on that

subject -- but our normal speakers are unavailable this summer, and

the two we have contacted also already have commitments. We're

doing our best though!

Pool party we hope to return. And this year we also are crossing

our fingers -- I want to offer a " Teen Hangout Room " for at least

Saturday night. Foosball table, ping pong table, and more -- a

place where the teens can hang separate from all the little kids.

I bring all this up now, because believe me, the months will speed

by so fast. The dates of the convention are July 22-25th in

Chicago. Convention registration is, I believe, $95?? Hotel rooms

are about $100 with all the taxes included. There are two dinners

Fri and Sat night, at about $7 per person. Medical conferences

normally run about $500 per person -- MAGIC covers more than $400

per family out of their own pocket with their own fundraising.

It isn't too early for you to start your own fundraising, to help

cover your own costs. If you are interested in raising your own

money -- getting people to make tax-deductible donations to magic IN

YOUR NAME and WE HOLD THE MONEY FOR YOU!!!! -- email me privately.

It is EASY to raise the money to cover your airfare, and all other

costs. Just don't wait to the last minute.

Bye! Happy Halloween!!! Salem (& Katy Frissora)

[Guest guest]

Hi ,

So glad that you had a great time in Mexico, you sure seem to deserve it. I

have not had much time to write, but before you left, you wrote to me so I

wanted to thank you. Jonah is now on Periactin and within the first month

on it he gained 12 ounces and recently another 3, so almost a pound!! We

also have an appointment with Dr. H. on January 15th, the earliest we could

get. Tomorrow we have our regular appointment with Dr. Rapaport at Mt.

Sinai. Anyway, I just wanted to ask your opinion regarding sugar at this

time. I think that you know that I an very concerned with nutrition and try

real hard to have Jonah eat healthy, but we started putting condensed sweet

milk in his cereal and he loves it. He also eats a lot of yogurt and

organic pudding. Should we worry at this time or focus on the weight gain?

Thanks for all your help!

, Jonah's mom, 22 months

Jen Salem is back- 2004 convention

> Hi! I have gotten back from Mexico, where I celebrated my 40th

> birthday by sleeping in, reading lots of books and taking lots of

> naps. Arrived home to a literal holocaust here in Southern

> California. But no, it is no where near our home -- although it has

> wiped out where we ski and camp! There is no such thing as blue sky

> in southern california though, and all of our children are not

> allowed PE or recess outside at this time, due to the smoke (and

> you can imagine how large the entire southern california area is).

> We live just 7 blocks from the ocean, so the marine breezes which

> blow IN (eastward) keep the smoke from the Simi Valley or San

> Bernadino fires from heading westward towards us.

>

> I probably will NOT go backwards in the listserve, simply due to

> time. Katy and I have to have all speakers for next summer's

> convention confirmed by Nov. 7th when we fly to Chicago for a MAGIC

> meeting....

>

> Here is some good news though! ROUGH idea of speakers for next

> year's convention....

>

> Dr. Stanhope, reknowned expert on RSS, will come from

> England again. He will speak this time on " Clinical Features of RSS

> and the Diagnosis " -- also comparing to SGA

>

> Harbison will speak on the Treatment of RSS and SGA.

>

> We have invited Prof. Barker, epidemiologist from England to

> speak on SGA and the health risks as an adult. This is the guy who

> headed up the massive European study that discovered the link

> between adults who were born SGA and the apparent greater health

> risks for insulin resistance, and more. He has NOT responded to us

> at this time. If he can not speak, we will try and find another

> speaker on Insulin Resistance.

>

> In the afternoon, we also will have a presentation on Gut

> Dysmotility among RSS and SGA Children. Dr. Spigland, the peds

> surgeon who has been working with Dr. Harbison, will be flying out

> from NY to speak. And we also hope to have the GI doctor from NY

> who has been caring for so many of your children also attend, as

> well as Dr. H.

>

> We also plan on having a presentation on the Practical Adjustments

> that often need to be made with living as a short statured adult.

> The RSS adult group will lead this, hopefully with a specialist who

> will lead this (e.g., at what height do you need to have blocks put

> on car pedals, etc).

>

> Saturday we have received confirmations from two new speakers. One

> is a published author and expert on ADD/ADHD -- Dr. Phelan. He will

> speak on that subject -- a subject close to the heart of many of

> you. And a psychologist will speak to the subject of Marriage and

> Family -- and the impact of having a chronically ill child. How are

> siblings impacted; what if one parent wants one treatment and the

> other disagrees; what about extended relatives? Etc.

>

> We are praying to find a feeding therapist, to present on that

> subject -- but our normal speakers are unavailable this summer, and

> the two we have contacted also already have commitments. We're

> doing our best though!

>

> Pool party we hope to return. And this year we also are crossing

> our fingers -- I want to offer a " Teen Hangout Room " for at least

> Saturday night. Foosball table, ping pong table, and more -- a

> place where the teens can hang separate from all the little kids.

>

> I bring all this up now, because believe me, the months will speed

> by so fast. The dates of the convention are July 22-25th in

> Chicago. Convention registration is, I believe, $95?? Hotel rooms

> are about $100 with all the taxes included. There are two dinners

> Fri and Sat night, at about $7 per person. Medical conferences

> normally run about $500 per person -- MAGIC covers more than $400

> per family out of their own pocket with their own fundraising.

>

> It isn't too early for you to start your own fundraising, to help

> cover your own costs. If you are interested in raising your own

> money -- getting people to make tax-deductible donations to magic IN

> YOUR NAME and WE HOLD THE MONEY FOR YOU!!!! -- email me privately.

> It is EASY to raise the money to cover your airfare, and all other

> costs. Just don't wait to the last minute.

>

> Bye! Happy Halloween!!! Salem (& Katy Frissora)

>

>

>

>

>

>

>

>