MAGIC and RSS Adults - the future

[Guest guest]

Sharon and Others (maybe you can forward this to the RSS-People

listserve?? -

I encourage you to contact the MAGIC office and ask to speak to

Jonas. He is the volunteer who now heads up the Adult Growth

Hormone Deficient Group.

Carmela heads up the Growth Hormone Deficient group, which is geared

towards children.

MAGIC has always been willing to help any group of families start up

a division. But our membership of only $30/year literally covers

the bare costs of postage for things like the newsletter and medical

articles that people want copies of, creation of newsletter, phone

bills for talking to parents, etc. So we depend on volunteers to

run each division, and a lot of fundraising!

MAGIC volunteers in turn do a lot of fundraising to try and raise

additional funds to cover things like the convention (where else can

you go to a 3-day medical convention for $95 registration -- most

medical coventions costs far more). The convention cost MAGIC more

than $100,000 last year. The financial aid that they offer families

who qualify. And more.

If the RSS Adults feel that they would like to have their own

division (we need 25 members to start an actual division, prior to

that, the division can be a " sub-division " within the regular one) --

I empower you to go for it!!! Someone has to step up though.

The only reason we have been able to add some things to the

convention for RSS adults is because people like Young and

Hillary and some others took on the coordinator role with me in the

last two years. I have explained to them that I simply do not have

enough hours in the day to balance my own family and my own personal

needs, plus my MAGIC role, to take on building an RSS Adult division

as well.

Our division has valued the contributions that the RSS adults have

made to our division. Parents of younger children have been

comforted, inspired and motivated by corresponding and meeting with

adults with RSS. In prior years, we explained that the true value

of a MAGIC membership for an RSS adult is quite simple -- you are

the future for our children. MAGIC at this time does not have

resources for you outside of the ability to connect you together,

that is 100% true. So the value of your membership, as an adult, is

more to the RSS children born after you.

However, the fact is that we have a very strong group of preteen and

early teen RSS adults growing up within MAGIC. Sooner than later,

they will be young adults and will need a support group like a

proposed RSS Adult group. Maybe at that time, one of these parents

will volunteer to head up/lead such a group. I am hopeful.

Years ago, it took someone like Jodi Zwain to start ACRSS out of her

home, to begin banding together parents of RSS children. Cathy

Walbridge then approached MAGIC and requested to start a

division within MAGIC for RSS parents, and it was accepted. Those

first few years there were maybe 40 families.

Four years ago when I took over as the volunteer division leader, we

had about 120 members in our division. Four short years later, we

have more than 300, with Katy Frissora now as my partner.

I can feel a lot of pent up frustration from the RSS adults, and

wish I had an easy solution for you. I encourage you to discuss the

options I have described in here. I strongly encourage someone to

step up and become the Jodi or the Cathy for the RSS Adults. I

agree that there is literally NO research on adults with RSS (tons

of research for adults that are now SGA though). A formal group

could be an invaluable resource for both RSS adults and children. I

hope that something can be developed.

I encourage the group of adults that already have the listserve to

maybe put some ideas together and present them to Katy and I. We'ld

be happy to try and help in whatever way we can.

Salem