Re: Convention - RSS Adults - Videotaping

December 23, 2004

Sharon -

I want to explain about the videotaping.

We received an out-of-the-blue donation of $2,500 several weeks

prior to the convention, with the idea that we might be able to

videotape Dr. Harbison and provide these DVDs to the local doctors

of families who leave the convention, go home and have their local

doctors say " who is this Dr. H and what is she saying? "

The problem was then finding a professional who could do it in such

short notice. We have videotaped in three prior years, paying about

$1,000, and had TERRIBLE quality.

No one we called was available. Or if they were available, they

wanted $5,000 and upwards!!!!

A member's cousin lives in Chicago. I literally pulled my hair out

working it out with him -- however, he could only videotape ONE room

due to his manpower (it would be just him and his two cameras and

audotape equipment). Furthermore, he could only videotape until

2:30pm because he had a wedding to go to.

So he taped the large primary room, which had Dr. Stanhope/Harbison

in it because that was what the donation was earmarked for. At the

last minute (days before the convention), Joe Jovanovich offered in

the interim, to say past 2:30pm and be responsible for turning off

the videocameras at 4pm and pack them up -- thus letting us continue

to tape Harbison's presentation -- however, the problem would be

that the tape would be straight on shots -- as the videographer

wasn't there, so it was just a still camera.

So many decisions that Katy and I make come down to finances,

unfortunately. It cost almost $1,800 to tape ONE room from 9-

2:30pm, and to make the four master DVDs from this (tons of hours of

editing). The donation covered this, and then the remaining $700 is

paying for the production of FREE DVDs that we then provide to any

requesting physician, and we pay for free shipping as well.

I wish I could have videotaped the adult panel (we chose not to

videotape the adults networking because there was no set

presentation and because the prior year, very personal and

confidential questions were raised, which would not be appropriate

for taping).

Please know that we truly think all decisions through. Some

decisions are easy, and some are difficult and painful. This

donation was earmarked for physician education, and we had to make

the decision that the earlier presentations involving RSS Diagnosis

and Dr. Harbison's unique treatment protocol, would be the

presentations that most physicians would request and watch.

I wish I had unlimited dollars. I wish I could meet all of the

members' wishes. All Katy and I can do is try our best.

Our apologies that you were so disappointed.

If the RSS adults have any concerns whatsoever with MAGIC, the lack

of an adult division, how they are approaching adults for

memberships, please contact myself or Katy. We have never heard any

complaints or suggestions from anyone with this regard, so we were

caught a little off guard. Katy and I will do everything in our

power, in which we are able, to try and discuss and meet the needs

of the members. But we have to know about it, first. Please tell

the others on the adult listserve to email Katy and I, OK?

Salem

>

> Hi -

>

> " Why isn't there an RSS Adult division of MAGIC " is something that

already was discussed

> amongst us adults not very long ago (less than 2 months?). Hillary

and Steph, who have

> been involved with MAGIC a lot longer than the rest of us and have

a more " leader " role on

> the RSS-People board both said pretty much the same thing you

did...if we want to have

> that division, we have to make it ourselves. Which makes absolute

sense...it would be FOR

> us, so it should come FROM us. However to date, no one, myself

included, has volunteered

> to step forward. And if that's what we want, or in this case,

DON'T want to do, that's the

> way it is and life goes on, But I just feel...looked over, maybe?

unheard?...when MAGIC is

> willing to take our membership dues but can't even tell us " your

membership is really

> helping the kids and won't have a whole lot to do with you,

because you're not a kid

> anymore. " Or couldn't even be bothered to videotape our segment at

the 2004 convention,

> which I think hurt the most of all. Granted, us adults are no Dr.

Harbison or Stanhope but

> if our topic was interesting enough to have all those caregivers

come to our segment, why

> couldn't we have been videotaped too, so other caregivers could

have the opportunity to

> learn what we had to say, if they so wished?

>

> I know that my self-imposed role with the parents here on the

boards is to be the " words

> of wisdom, " as an RSS kid who grew up. And I've gotten more than

my share of thanks

> from the parents, in person, on the boards, and in email...so I'm

not whining about that at

> all. But I got my MAGIC membership as a way to help ME because I

have RSS...not as a way

> to to give $30 to a charitable organization who, although very

dedicated to its children,

> doesn't give me, as an RSS adult, a whole lot in return.

>

> Please don't get me wrong...I'm not majorly upset about this or

anything...it won't stop me

> from renewing my membership or going to the convention

in '05...but I just felt I needed

> to get it off my chest.

December 24, 2004

Hey jennifer, just to let all know on the listserve that i (with others help0

managed to videotape the adult panel and am going to send a copy to sharon (who

will convert to usa tape) so when she gets it i'm sure she will let all on the

list know as they can arrange with her to obtain a copy for themselves.

Salem wrote: