Lana/ Barb

[Guest guest]

Hi Joyce,

I hope you're not discouraged! I really want to see this thing take off in a

bad way. Did you read the email from someone that sugested silver w/arms and

legs of a body being attached with little silver rings where the arms and

legs could move or dangle? Also there was the one using elastic, which could

also have the silver incorporated into it somehow.

Don't give up, I'm not. I think we can come up with an idea that everyone

likes and supports, and it sounds as though there are a lot of people out

there that want to see this. I thank you for bringing the issue up, as I had

never considered this. You are a great help to a lot of people and I think

you have grand ideas, so please don't be discouraged. I am encouraged by the

many responses.

Love Lana

[Guest guest]

After initially being encouraged by all the emails of people wanting the

necklace and ribbon, sight unseen, I admittedly am now feeling a

somewhat discouraged. The sterling silver metal ribbon wouldn't have to

be THE symbol for EDS, perhaps - A symbol and a means of raising money.

It doesn't need to be any more than that; the ones listed were all cloth

whereas this isn't. Rather than seeing others are using the color

silver, this is the metal silver. Not the same thing. It could even be a

fundraising campaign, say for a year - much the way organizations vary

what they do to raise funds on a yearly basis. I think there are

differnet ways this idea could contribute whether or not it ends up

being THE symbol for EDS. And, does there need to be just one symbol or

point of recognition?

I agree the cloth ribbon thing has been done and done again but I hadnt

been aware of something made of METAL being used. That is what would

make it special; that it is a piece of jewelry. It won't fall apart,

unravel or discolor (not like my purple violence against women cloth one

has...). And it happens to be of the same material as silver ring

splints which officially or not, seem to be something that is becoming

associated with EDS. The cloth ribbons aren't really worn all the time

by those who have them, mainly on days related to a given cause but this

is something that people may be willing to wear on a daily basis. Silver

as a metal is something that appears fine and strong on the first glance

but when you really work with it, it can be easily bent (like some of

us...LOL)

I was just trying to do a nice, generous thing to benefit EDS. I am

willing to donate my time and energy to make them for free and mail them

out. If it becomes an official symbol, great, if not, people could still

get them, the donation could still be made. With the people who emailed

me privately so far and on the lists, it would amount to about $60 being

donated so it seems the potential for these to sell and contribute to

fuindraising for EDS is there.

Joyce

[Guest guest]

> The New Zealand group would be behind this as well.

Terrific!

-Barb