Re: Donna/ Foundation Information

[Guest guest]

Hi Donna, I'm so glad that you got to talk to the phone bandit. She can really cheer you up huh? Thanks for your wonderful post to the group. I'm so happy that you feel at home with us so soon. It's not hard with this bunch.

Okay about the RP Foundation. It is totally separate from the support group. It is hard for me to separate them at times. Have you visited our site? It is at www.polychondritis.org

We ask for a $15 donation a year. You will be added to the Foundation group. This site does not get as much mail as this. It's main purpose is for voting purposes and new RP infomation. There is no chatting. ( usually) lol We will be voting next on the cookbook items.

We will have a newsletter coming out with information on RP, it's treatments, etc. We are trying to do this 3 times a year, maybe 4.

All of the work at the Foundation is totally voluntary. It is done from the heart. The money we raise goes to research. We were able to make contributions for the last 2 years to Dr. Jane Buckner's research at the Virginia Mason Research Center in Seattle.

A lot of us have written letters to family and friends ( I have a copy of a letter if you need a sample) explaining our illness, info on the Foundation and asking for donations to the Foundation in our honor. A lot of members have had family members make a donation to the Foundation in place of a present for their birthday, anniversary, Christmas etc.

We have a group that puts a quarter or spare change in a jar when ever they exercise ( or don't lol), think of Angie, or just because and then every 3 months Marilyn reminds us that it is time to send in our change. Every small amt adds up.

Our fundraiser for 2003 is the cookbook.

Our main goal is to one day find a CURE for RP. That is the ultimate goal. I will settle for remission. LOL

All donations are tax deductable. We are a non profit org.

I'm sure I'm leaving a lot out. Anyone, please add anything I have forgotten.

Oh....we are always looking for volunteers. LOL So if you think of an area where you would like to help, just let one of us know.

The Board members are listed on the web site with our personal e mail addys. Feel free to contact us at any time.

If you wish to make a donation Please make your check our to

RP Foundation and mail it to :

RP Foundation

c/o Colloran

775 Bounty Place

Manteca, CA 95337

If your family or friends are making a donation, PLEASE have them state who it is in honor of. Just have them write your name on the bottom of the check even. This helps me out tremendously. I hate not to give honor to where it goes. Roy will be back soon and the " In Honor" page on the web site will be updated. We had a great Christmas!!

I hope this helps you out. As usual, I've written a novel. Sorry.

Wecome again to the group.

hugs