Information for our new members

[Guest guest]

For all the new members, I'd like to take a few minutes and inform you of

what we have to offer.

We have chats every Wed at 9:30 am Pacific Time and on Fridays at 6:30pm

Pacific Time. These chats are at:

http://clubs.yahoo.com/clubs/relapsingpolychondritis

Everyone is welcome. If you have a microphone, then we can all talk and put

a voice to a name. If not come anyway, we always type too. It's a lot of fun

and we have a lot of laughs. We have over 200 people to give you support.

That's a lot of shoulders. LOL Someone is always here for you.

We had our first get together last Sept, on Labor Day weekend in Oklahoma,

thanks to Mrs. Heidi Main, aka Mrs. Nosey. LOL We had a wonderful time and

it was so great to get to finally meet every one. It was hard to leave after

3 days and there were a lot of tears shed. But we have become so much closer

friends. We are planning our next reunion in 3 years in Oregon. Start

saving your pennies. It will be wonderful, just don't know if I can wait

another 3 years. LOL

If you haven't seen our founder's site, Angie, then please look at it. It is

at:

http://rpolychondritis.tripod.com/index.html

We have an RP Foundation which it totally separate from this support group.

It is a non profit Foundation. Our goal is to help make the public and

medical professions more aware of RP. We have a newsletter, a site to update

you on the Foundation, and we are currently finishing up on our Brochures so

they should be able to hand out soon. We are always looking for volunteers

to help. We have all types of places to volunteer, newsletter, fundraising,

Public Relations, Membership, Research, etc. If you are interested, please

just tell us what you are interested in and your talents. Send them to

either myself or Barbara Angerhofer, our volunteer coordinator at

angerhob@...

We are working with Dr. Jane Buckner from the Virginia Mason Research Center

in Seattle, WA. We were able to send her funds for her research last year.

Good start for our first year. She is doing research on RP and will gladly

send you a kit if you are interested in her research. You may email her at

jbuckner@...

Just tell her you are with the RP group and you would like to participate in

her research. All it curtails is a few vials of blood.

All we ask is that you send a $15 a year donation to the Foundation. (We

will always accept more). LOL You may get more information about the

Foundation at:

polychondritis.org The site isn't finished yet, more will be added soon.

For those of you old members who still haven't donated, please think about

it. It is helping us to someday find a cause and maybe a CURE for this

disease. And for those of you who have and continued to support us a BIG

thank you. There have been a lot of discussions on the Foundation site that

might be of interest to some of you that have not donated.

We also have an " In Honor of " page. This is for anyone who would like to

honor someone for their Birthday, Anniversary, etc. When asked what you

would like for your Birthday, Christmas, Valentine, etc, just tell your

friends and family to send in a doantion to help find a cure for your

illness. If someone asks that you donatie to your favorite charity, instead

of flowers for a funeral, please think of us.

We also have RP Foundation Angels. For those of you who can't join because

of a hardship, please contact me privately. We have angels that are more

than willing to sponsor you. This is all confidential. No one knows who is

sponsored and who sponsored them. Also if you are interested in becoming an

angel, you too may contact me. No one will be denied, because of hardship.

I think I've covered most of the important things. If you have any questions

at all, please don't hesitate to ask questions.

If you would like to send in a donation to the Foundation you may make your

check or money order for $15 in US dollars to " RP Foundation " and mail to:

RP Foundation

c/o Colloran

775 Bounty Place

Manteca, CA 95337

Thank you all for you help