Re: TV Interview/Stacia

[Guest guest]

Stacia:

Can you send me the materials you prepared either by email or snail mail?

I figure, why re-invent the wheel.

Schulz

5868 sville Road

Floyds Knobs, Indiana 47119

Thanks again for all your hard work!

and Rob 15 Spondy

On Thu, 05 Aug 2004 15:59:57 -0400 carneyval@... writes:

Hi Stacia,

I know you must be feeling so frustrated - to put so much into the

interview and see so little of your effort in the result - but every step

towards getting the word out is a positive one!! You did great! You now

have me motivated. I am going to email the editor that worked with the

Arthritis Foundation locally on an awareness section that was in the

Washington Post magazine last winter - they included an article on Robbie

and she was very easy to work with. I'm going to email her and put a bug

in her ear about the bill - who knows, maybe she'll do a story. See,

your move with the tv interview is spreading all over!

Val

Rob's Mom (6,systemic)

[Guest guest]

Wow, Stacia. You did a lot of work:) I am very impressed. Are you going to

try to go to conference next year? I'd love to meet you.

Take care.

Patty

[Guest guest]

In a message dated 8/6/04 6:17:08 PM Central Standard Time,

staciar@... writes:

> I had a map showing where all the 192 pediatric rheumies are

> located. The map is mostly blank as you can imagine.

>

>

Stacia,

As you know ,I am giving a speach about AJAO in front of EVERY walk chair

and team development chair from every walk location in the US.

I know you are very educated and very corporate.Is there any way possible to

e-mail the map to Shumm at kshumm@...

The other speaker,who I think is the daughter of the mother who started AJAO

is conflicted with work.So I am the sole speaker and have to know now the

history of AJAO besides my experiance and that map was SAD!!!!

I'm sorry to hear you spent so much time and effort for the news.Paper is the

best way to go.From what it sounds,you did great and did spread

awareness.Robbin is right,the Oprah Show or something similar where you have a

full hour is

the way to go.Their web sites are always asking for stories pertaining to

something they want to do.You and all of us might bring some light on something

they never dreamed of(heard of).

Love and Hugs

Becki and 6 systemic

[Guest guest]

Hi ,

Here's what I had set out for the TV interview:

I broke out each of his systemic symptoms into categories and put

all the medicine pertaining to that symptom together. I put each

type of medicine on a mini-poster that I made of each symptom just

to label it for the camera in huge font-type on the computer. So I

had a section for fevers with several thermometers, typlenol,

ibuprofen, etc. and a doll-house bath tub. The other symptoms I

categorized were swollen liver/spleen/lymph node, rash/skin, GI

inflammation, lung, fatigue, joints, eye, other daily OTC to

counteract side-effects of other meds. I had all the meds.

categorized and sitting on their mini-poster. Then I had a separate

one for prednisone with my phrase to describe it as the " Making a

Deal With the Devil " drug. I had gathered some " before pred. " and

some " after pred. " pictures of Hunter to show.

I gathered the last 5 years of daytimer-type of notebook calendars

which document every med. and fever and event since day one.

I had a map showing where all the 192 pediatric rheumies are

located. The map is mostly blank as you can imagine.

I made a large poster of CALL TO ACTION and made bullets of how to

easily email congress about the Arthritis Bill (6 quick mouse

clicks).

I set out 5 thick binders of articles and resources I've put

together since Hunter's diagnosis including one specifically

including only his rheumy/ophth. appt. notes and labs/tests. One

binder was all about our local support group and how to contact us.

I set out a few of the AF brochures pertaining to arthritis in

children.

I set out his Arthritis Walk t-shirt and Hunter was wearing his t-

shirt from the AJAO conference.

Finally, I gave the reporter Hunter's speech from the arthritis

walk, his story from being an honoree at the walk, and a poem I

wrote for the walk.

I was trying really hard to make it easy for the interviewer to show

some visuals. In hindsight, I don't think they wanted to see

anything prepared because it might look too staged. They were

looking for " off the cuff " stuff.

Mostly, it was a big effort in finding, gathering, organizing and

setting up while trying to keep three my monkeys from running around

and ruining things.

I hope this helps you and anyone else.

Stacia and Hunter,8,systemic,iritis

> Stacia:

> Can you send me the materials you prepared either by email or

snail mail?

> I figure, why re-invent the wheel.

> Schulz

>

[Guest guest]

Hi Patty,

We are most definitely IN for the RI Conference next year barring

something tragic. We make an annual visit to Ohio to visit all my

family every summer for at least 3 weeks. That's where my kids have

7 cousins to play/bond with which I think is extremely important.

My husband is from Boston and his parents and sister/brother are all

in MA and CT. They are always hounding us to visit, but there is

only one of our kids cousin there and she's just a baby --- so not

as much fun for the kids, to be honest.

Anyway, our plan for next summer is to have my kids and me fly to

Ohio anyway, then we'll drive to Providence for the conf. (about 10

hours) and then visit with all kinds of friends also. That's my own

stomping ground since college until 2000 when we started moving

around.

I continue to encourage all that can make it to go to the Providence

RI conference next late July.. If you can't afford it or don't have

enough frequent flyer miles, start contacting your local AF chapter

and National AF now to see what they will be doing with

scholarships -- and get going on fundraising to help support your

chapter so someone can go.

Stacia and Hunter 8 systemic, iritis

> Wow, Stacia. You did a lot of work:) I am very impressed. Are

you going to

> try to go to conference next year? I'd love to meet you.

>

> Take care.

> Patty

>

>

>

[Guest guest]

In a message dated 8/7/04 1:14:31 AM Eastern Daylight Time,

staciar@... writes:

> My husband is from Boston and his parents and sister/brother are all

> in MA and CT. They are always hounding us to visit, but there is

>

Hi Stacia:

I am planning on attending this one:) For us, to get to family in MA, will

be about nine hour drive, YUCK! Although, it will work out great, we will

visit family in MA and then drive a short distance to RI. On the way back,

we'll

stop in at some of the NY relatives and make the return trip over two days.

Take care.

Patty

[Guest guest]

Stacia:

WOW! That is so awesome. You certainly did your'homework'!!

That is an amazing display, to say the very least.

Your example will lead all of us!

and Rob 15 Spondy

On Sat, 07 Aug 2004 00:16:43 -0000 " staciar101 " <staciar@...>

writes:

Hi ,

Here's what I had set out for the TV interview:

I broke out each of his systemic symptoms into categories and put

all the medicine pertaining to that symptom together. I put each

type of medicine on a mini-poster that I made of each symptom just

to label it for the camera in huge font-type on the computer. So I

had a section for fevers with several thermometers, typlenol,

ibuprofen, etc. and a doll-house bath tub. The other symptoms I

categorized were swollen liver/spleen/lymph node, rash/skin, GI

inflammation, lung, fatigue, joints, eye, other daily OTC to

counteract side-effects of other meds. I had all the meds.

categorized and sitting on their mini-poster. Then I had a separate

one for prednisone with my phrase to describe it as the " Making a

Deal With the Devil " drug. I had gathered some " before pred. " and

some " after pred. " pictures of Hunter to show.

I gathered the last 5 years of daytimer-type of notebook calendars

which document every med. and fever and event since day one.

I had a map showing where all the 192 pediatric rheumies are

located. The map is mostly blank as you can imagine.

I made a large poster of CALL TO ACTION and made bullets of how to

easily email congress about the Arthritis Bill (6 quick mouse

clicks).

I set out 5 thick binders of articles and resources I've put

together since Hunter's diagnosis including one specifically

including only his rheumy/ophth. appt. notes and labs/tests. One

binder was all about our local support group and how to contact us.

I set out a few of the AF brochures pertaining to arthritis in

children.

I set out his Arthritis Walk t-shirt and Hunter was wearing his t-

shirt from the AJAO conference.

Finally, I gave the reporter Hunter's speech from the arthritis

walk, his story from being an honoree at the walk, and a poem I

wrote for the walk.

I was trying really hard to make it easy for the interviewer to show

some visuals. In hindsight, I don't think they wanted to see

anything prepared because it might look too staged. They were

looking for " off the cuff " stuff.

Mostly, it was a big effort in finding, gathering, organizing and

setting up while trying to keep three my monkeys from running around

and ruining things.

I hope this helps you and anyone else.

Stacia and Hunter,8,systemic,iritis

> Stacia:

> Can you send me the materials you prepared either by email or

snail mail?

> I figure, why re-invent the wheel.

> Schulz

>