Re: Update on Jen Salem/Our division

[Guest guest]

: thank you for all your hard work. We all appreciate it -

and so much look forward to seeing the Guidebook.

One quick question for you.....Being very new to this area

(Virginia) and having all new physicians who are less familiar with

RSS than in the Chicago region - I'd like to put together separate

binders for each of my new physicians. These would include a summary

of Ian's health, his growth chart, specific medical docs from his

medical file pertaining to each respective physician, Magic

Foundation brochures, and upon approval from Magic - the letter from

Dr. H on the website. The question is - does it make sense to do

this now - or should I wait for the Guidebook to be ready?

Thank you .

- H

> Hello everyone -

>

> Thanks to so many of you who are already planning your Walk for

> MAGIC walkathons. Exciting!!!! Katy and I will be mailing

everyone

> a letter (if you are a member of MAGIC or are in our database) --

> but wanted to give you the good news here.

>

> I am going to be taking a four-month " leave of absence " from my

role

> as the co-division consultant (business development & fundraising)

> so that I can concentrate more wholly on finishing the RSS/SGA

> Guidebook. My substitute, drum roll, will be our awesome RSS/SGA

> scholarship coordinator -- Dayna Carney. She has graciously

agreed

> to fill in for me, working with Katy Frissora, while I finish

> writing the Guidebook. Dayna will officially begin Sept 1st and

> we'll send our more info then. Be nice to her, OK?

>

> Stanhope has agreed to be the primary medical editor with

> Madeleine Harbison. When talked of how important this

> Guidebook will be to the medical community, it made me realize

that

> I couldn't keep at the slow pace I was at -- scrambling to find 2-

3

> hours a week to write in between the kids, house, laundry, and our

> division stuff. As you all know, there are only so many hours one

> can volunteer in a week!

>

> The other great news is that Dr. Czernichow, who spoke at our

> convention and is one of the most reknowned researchers in the

field

> of SGA, (and extremely well respected) has enthusiastically agreed

> to author the chapter on " Being Born SGA: Consequences into

> Adulthood " which he spoke at the convention. This is a BIG kudo

for

> our Guidebook. Physicians will pay more attention to the

guidebook

> when they see who the editors are, and contributing authors such

as

> Mitch Geffner, Stanhope, Harbison and Czernichow.

>

> I have also almost completed the first draft of the IRB

> (complicated, but it is the " ethics request " that must be approved

> in the US before you can do a study.) This RSS/SGA survey will

> hopefully be conducted in 2006, and Harbison/Stanhope/Toumba and I

> will complete it for publication by the end of 2006 or early 2007.

>

> So, if you are trying to figure out if you should do a " walk " of

> your own ... This is why!!!! Our small group of parents are the

> ONLY ones out there doing anything like this!!! No one is going

to

> help our kids and future kids with RSS except us.

>

> I don't want to beg, but I will!!! The walkathon is so easy.

MAGIC

> gives you a whole kit with everything you need -- and you pick

your

> own day, time, and how far you want to walk. You get pledges for

> each mile. The best thing is if you have kids that are old enough

> to walk -- it is a great family experience, and your child can

write

> a pledge appeal letter or draw a picture -- every dollar counts.

>

> Think of it this way. If 50 families each raised $500, we would

> have $25,000. It adds up!!! Please help! Call tollfree 1-800-

> 3MAGIC3 and ask for your own walkathon participation kit now!

Make

> a birthday party out of it. Get your child's Girl Scout or Cub

> Scout troop to walk together. Or do it simply, like our family

did

> last year. Too busy to organize anything -- wrote a

letter

> and we mailed and emailed it to family and friends, and she went

> door to door to neighbors. Then one Sunday morning, it was sunny

> and we said " let's do it today. " And off we went -- she walked 11

> miles.

>

>