Re: Fw: Welcome New members

[Guest guest]

Welcome to all that I may have missed. Heidi thank you for giving out all

the great info about the group. I must warn you newbies, DON " T forget your

meds or you will be dealing with one mad German, AKA Mrs. Nosey. LOL (married

to Mr. Onery) LOL

I wanted to add that we have chats on Weds at 9:30am pacific time and on

Fridays at 6:30pm pacific time. You might want to go and sign up first so

you will be ready to chat. There is voice there so if you happen to have a

mic (or headset) please use it. We laugh alot and have a great time. Just

go to:

http://groups.yahoo.com/group/rpolychondritis/chat

I would also like to take this time to tell you about the RP Foundation. It

is totally separate from this support group, but we are all so proud of it.

It is a non profit Foundation and the purpose is to provide support to

Relapsing Polychondritis sufferers, their friends and family members in the

form of educational material and promote awareness by distribution of

educational materials to health care providers.

We are new and growing fast. We ask for a $15 yearly donation. No one gets

paid for their work in the Foudation. Dr. Jane Buckner of Virginia Mason

Research Center in Washington is working with us. If you would like to

participate in her research you may contact her at Jbuckner@...

Tell her you are part of the RP support group and she will send you a kit and

information. This costs you nothing.

We are in the process of getting our brochure printed now. We are all

excited. This will be distributed by any one that is interested. You may

put it in dr. offices, hospitals or where ever you think there may be a need.

We are also in the process of making a quilt. It will be in patriotic theme.

If you are interested in making a square for it, let me or Heidi know.

Kathleen Loch will be putting it all together for us and we will raffel it

off. Kathleen is in the process of moving from NY to Calif, so it will be a

bit before we will get it done. So, there is pleanty of time to still plan

a square if you want.

We are always looking for volunteers so if you feel the need of just want to

help, please let us know. Tell us what you are interested in and what

talents you may have. I'm sure we can find a place for you and put you to

work. LOL

The funds raises will go towards research on RP. Last year we were able to

give to Dr. Buckner.

If you are interested in making a donation or joining the foundation, please

make your check or money order ( US Dollars) out to " RP Foundation " and mail

to

RP Foundation

c/o Heidi Main

19609 E. 131 Pl. S

Broken Arrow, OK 74014

Usually, this would be sent to me, but because of my upcoming surgery, Heidi

has so kindly volunteered to take the money. ( It couldn't be in better

hands. LOL )

If you would like to join, but because of hardship you can't please email me

or Heidi privately and let us know. We have RP angels all around that are

more then willing to sponser someone. Also if you would like to be an RP

angel, let us know that too and we will call on you for $15 to sponser

someone if the need arises. This is all confidential. No one knows who is

sponsered and who sponsers who.

We also have a newsletter. I'm probably forgetting a lot, so anyone, please

step in and add to what I've left out.

Just want all the newbies to know what we have to offer besides lots of

shoulders, hugs, love and prayers.

Oh.. The Foundation has a web site. I think it is being worked on now, but

will be back up in a few days. It is at www.polychondritis.org.

Colloran