RSS/SGA Convention - RSS Adults

[Guest guest]

guess those of us who went for the first time last year weren't around when the

decision to

only do adult stuff every other year was made. I wish I had known.

Personally, it doesn't matter to me very much...I went last year and although it

was nice to

meet my RSS Adult peers face-to-face, the stuff that we spoke about on our own,

to each

other, was similar to what we talk about on our own Yahoo Group...just faster

conversations beause we don't have to wait for people to log on <wink>, and a

somewhat

different circle of new friends, because some of the people weren't online

often, if at all. I

feel bad for the adults who come this year for the first time though...except

for talking to

each other informally, there isn't a whole lot for us as a group, albeit a small

group (no

pun intended <wink>), as paid members of MAGIC.

I dunno...I would think that the " Adaptations for RSS/SGA Adults " would bear

some

repeating to the parents, because we are, essentially, their kids' future

(especially if they

aren't going the route of growth hormones). When we weren't " offically "

videotaped last

year, as a convention newbie I figured for sure it was because it was something

that was

done every year, so there was no need to tape because " there's always next

year. " I guess

not.

I guess my main thoughts and questions should really go directly to MAGIC, to

ask them

what I should expect my membership to do for me. I mean, obviously, the kids

are the

priority. And there's a lot of kids. But there are teens who are going to be RSS

adults in 5

or so years and a bunch of pre-teens who will be there in just a short decade.

MAGIC has

been around for 15 years...some of those first RSS kids who joined have to be

grown up or

nearly so...is the long-term plan for there to eventually be an RSS Adult

division, when

there's more than a half-dozen adults at a convention? Or, perhaps because

there's no

active treatment in adulthood, are they expected to just go on with their lives,

leaving

MAGIC for the " new kids? " And if that's the case, aside from networking at the

convention,

why do they want me to be a member?

-Sharon-

Just an RSS kid who grew up

[Guest guest]

Sharon - You raise very good points that Katy and I have batted

around ourselves. I think that we have to put the onus (is that a

word) back on you and the other RSS adults. The RSS/SGA division

was founded by RSS/SGA parents -- and the only way it exists today

is because parents keep volunteering and driving it. So, I know

what MAGIC would say to you as a member -- we need your membership

because we simply can not continue to drive research and education

efforts into the medical field without a membership base. However,

on the flip side, the members have to drive what it is you want --

and volunteers have to step forward to drive that.

MAGIC only charges $30 a year for membership, which essentially

covers the phone bills, postage, etc. - the base costs. There are 3

full-time paid employees. The rest of us are

essentially " volunteers. "

I truly believe that the future of our division will lie in our

ability to branch out even further. Right now I am volunteering as

the head of fundraising and business development; Katy is in charge

of family contact. Ideally, we would have someone in charge of

Preteens and Teens; and another person volunteering in charge of the

Adults. We would have sections in the Newsletter devoted to those

groups. Maybe we have PenPals for the Preteens and Teens. Etc.

However, unfortunately, I already volunteer too many hours a week

for MAGIC in my current role; Katy does a ton as well. We can't

expand without other volunteers. I would recommend that you talk

this over on the Adult RSS listserve. Maybe one person could

volunteer as the leader for the first year. That person could meet

with Katy and I and devise a plan of building up a true RSS Adult

group. Unfortunately, it costs a lot of money to pay for hotel,

airfare and meals for a convention speaker. In the past, with only

6-10 RSS adults in attendance, we simply can not cost justify the

speaker expenses, unless we use a speaker that is already being used

in a different presentation. We can do that again, but we need an

Adult RSS coordinator.

Let Katy and I know what your listserve thinks. I truly believe

that this is a critical growth area for our division, but again, it

has to come from us, the members.

Thank you!!

>

> guess those of us who went for the first time last year weren't

around when the decision to

> only do adult stuff every other year was made. I wish I had known.

>

> Personally, it doesn't matter to me very much...I went last year

and although it was nice to

> meet my RSS Adult peers face-to-face, the stuff that we spoke

about on our own, to each

> other, was similar to what we talk about on our own Yahoo

Group...just faster

> conversations beause we don't have to wait for people to log on

<wink>, and a somewhat

> different circle of new friends, because some of the people

weren't online often, if at all. I

> feel bad for the adults who come this year for the first time

though...except for talking to

> each other informally, there isn't a whole lot for us as a group,

albeit a small group (no

> pun intended <wink>), as paid members of MAGIC.

>

> I dunno...I would think that the " Adaptations for RSS/SGA Adults "

would bear some

> repeating to the parents, because we are, essentially, their kids'

future (especially if they

> aren't going the route of growth hormones). When we

weren't " offically " videotaped last

> year, as a convention newbie I figured for sure it was because it

was something that was

> done every year, so there was no need to tape because " there's

always next year. " I guess

> not.

>

> I guess my main thoughts and questions should really go directly

to MAGIC, to ask them

> what I should expect my membership to do for me. I mean,

obviously, the kids are the

> priority. And there's a lot of kids. But there are teens who are

going to be RSS adults in 5

> or so years and a bunch of pre-teens who will be there in just a

short decade. MAGIC has

> been around for 15 years...some of those first RSS kids who joined

have to be grown up or

> nearly so...is the long-term plan for there to eventually be an

RSS Adult division, when

> there's more than a half-dozen adults at a convention? Or, perhaps

because there's no

> active treatment in adulthood, are they expected to just go on

with their lives, leaving

> MAGIC for the " new kids? " And if that's the case, aside from

networking at the convention,

> why do they want me to be a member?

>

> -Sharon-

> Just an RSS kid who grew up

[Guest guest]

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.