RSS/SGA Convention 2005 - Confirmed Schedule

[Guest guest]

Final Schedule for RSS/SGA Convention 2005

Hello –

Katy and I wanted to let you know that we can now say that the

presentation schedule is finalized for the RSS/SGA division, at next

summer's MAGIC convention. Each year it only gets better and better.

How many of you have heard of Czernichow or Chernausek?

Both pediatric endocrinologists, these two are probably the lead

physicians behind the IUGR/SGA research front today. Czernichow

from Paris and Chernausek from the US (Ohio) – they both were on the

International SGA Advisory Board, Chernausek was also on the IUGR

Study Group. These two men have been involved in a great deal of

research in many different aspects of IUGR/SGA children – we have

nine published studies with Czernichow as an author in our MAGIC

library alone.

Drum roll…. And BOTH are coming to this summer's MAGIC Convention!!!!

There is so much to tell you, but we are going to try and keep is

somewhat brief in this posting. If you have questions regarding

presentation content, let either of us know (rss2katy@ hotmail.com).

Convention Begins: Thursday, July 21st, 2005, Chicago, IL at the

Marriott O'Hare Hotel

* NEW: 2:30 – 3:15, 3:30 – 4:15 and 4:30 – 5:15pm: you can attend

our first-ever " mini-101 " sessions. There are three educational

sessions – " The Endocrine System: The Basics; " " Dentistry and

Growth; " and " Growth Charts/Labs: How to Read the Numbers. " Plus

there will be a " Welcome Grandparents " gathering for any

grandparents who attend – in launching our first-ever Grandparents

Club. As always, the exhibit room will be open until about 10pm,

with tons of exhibitors giving away lots of different freebies – the

kids always love that!!!!

Friday, July 22nd

It would be easier if I could paste a chart here, but will try my

best.

9:00-10:00am

Ballroom C: Jen & Katy will present on the " RSS Basics " – this is

really for parents new to an RSS diagnosis or first-time attending a

convention

Ballroom D: Dr. Harbison: " Adrenarche & Puberty: Definitions " – a

brief presentation defining what adrenarche & puberty are, symptoms,

etc.

10:00am – 12:00pm

Ballroom C: " Treating RSS/SGA: the Dr. H Approach " and " Common GI

Problems " – Dr. Madeleine Harbison

Ballroom D: " Beyond Early Childhood: A Discussion " : here Jodi will

lead a group of parents of teenagers and Katy will take the

preadolescent parents (HA!). This will be a moderated discussion

group.

LUNCH

1:00 – 3:00pm

Ballroom C and D combined: " Being Born SGA: Consequences into

Adulthood " : - Prof. Czernichow. This presentation will focus on the

child who is born SGA, what endocrine and metabolic changes may

occur in this child in-utero, and what the studies are finding this

means for the child as he grows into adulthood. Not a light topic.

3:00 – 4:30pm

Ballroom C: " Statistical Findings on Growth Hormone Treatment for

RSS/SGA " Dr. Chernausek: He will give an overview of all the

different studies that have been completed on RSS/SGA children and

growth hormone treatment – benefits, risks, adult final height, etc.

Ballroom D: " Adrenarche & Puberty: Why You Should Care & What You

Can Do " (Harbison) – a continuation of the morning presentation and

discussion

DINNER & SOME SOCIAL ACTIVITY FOR FAMILIES THAT NIGHT

Saturday, July 23rd

Incredible! From 8:30 – 10:00am, we will have two FIRST-TIME NEW

workshops for children: one will be for " siblings of affected

children " and one will be a discussion group for affected children.

Both run by professionals; ages 7 and up only; pre-registration

required; attendance is capped.

8:30-10:00am – for parents, there will be several presentations

including " The Parent as an Advocate in the Insurance Context. "

10:15 – 11:45am: Hard choices!!!!

a) A roundtable of affected older children will talk to other

kids, siblings and parents about growing up with a growth disorder.

" Ethical Considerations of Growth Hormone Therapy " by Dr.

R. Brown

c) Helping your Child Positively Manage a Genital/Reproductive

Difference

LUNCH – we will have our 3rd annual RSS/SGA private pool party –

Yahoo, always a favorite

FREE afternoon

DINNER and BINGO PARTY that night!!!

And yes, Dr. Harbison will again provide her free consultations to

families. However, we are still working out the schedule and how we

will implement them this year. Last year, she and her volunteers

worked 13-hour days for 5 days straight. It has become clear that

it is too exhausting for her, on top of her presenting. We can

guarantee that first-time families will be top priority, along with

her New York patients getting checkups. We hope to also have time

slots for " returning " families (meaning you have seen her at a prior

convention but never in New York). However, I encourage you to do

the following: either a) see her in NY before July; or register

the minute the registration materials come out, so that you are

FIRST in the queue. We will keep you posted in January or February.

COSTS: Convention registration should remain the same as last year

(and it is LOW compared to any other medical conference) -- $95 plus

misc charges for dinners if you stay. Hotel is roughly $100 a night

including all taxes and surcharges. No rental cars are needed if

you fly in to O'Hare because there is a free shuttle.

SCHOLARSHIPS: Last year, thanks to many of you who did fundraisers

and donated money, were provided scholarships for registration and

hotel for more than 30 families!!!! At this time, we have ZERO

dollars in our scholarship fund…. But I am sure we will get some

funds at the New Year begins. Applications will be taken beginning

Feb. 1st – contact Salem for more information.

Whew. That's all for now. The official MAGIC registration package

won't come out until probably February – we just wanted to let you

know early, so you can begin saving money, doing your own

fundraisers (ask me how you can fundraise money through MAGIC so it

is tax deductible for your donors and yet you use the money to pay

your costs!!!) and planning your trip next summer!!!!

Salem and Katy Frissora

[Guest guest]

Wow, and Katy - what a schedule! Look how we have grown up

over the years! This convention looks like the most professional,

exciting one yet! I'm excited about this one. I don't even know

where to turn yet and I've " outgrown " so much of it already. A

first-timer or parent of a younger child will be overwhelmed with

excitemnt and anticipation.

But I am confused about one thing - I thought that some of the money

raised by the walkathon was going to be used for scholarship money

for the convention. (By the way, what was the almost final count?)

I know you had earmarked a good deal for the RSS/SGA book, but I was

also under the impression that there was convention money there,

too. Of course, I get confused, so I probably got things mixed up.

Congratulations you two. You have done a remarkable job. Once

again, I will be there with bells on (and, I guess, prepared to help

run a session <grin>) and Max will be in tow. Who else is going to

stand by that bidding table and " dare " anyone to outbid something he

wants????

Jodi Z

[Guest guest]

Hey Jenn and Katy!!

Another wonderful job!! I, personally, cannot wait until July!! It looks to

be another information-packed 3 days!!! The convention is always a special

time for us! It's like coming home for a huge family reunion, and I love the

idea of a " Grandparents Club " !!!

For those that are new to the list, I'd like to add that the money spent

attending the Convention, will be some of the best money you ever spend for

educating yourselves on your child's condition! And the friendships that you

make are priceless! You won't find a bigger bang for your buck anywhere!!

Hugs for you all!!

Pat (g-ma to , RSS, 35 months, 23.9#, 32.2 " , G-Tube)