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Unregistered User
(12/7/02 1:05 am)
Chat conference minutes
<Beth> Agreed that she would "love to organize FMD history and will write a proposal on how to accomplish this project and share with everyone."

<Bettje's JIm> Accepted the task to "put together a data base with all of your names addresses phone etc."

<Deb> Deb suggested that "we need a standard form for everyone to input their age, sex, genetics and         so on" It is suggested that they work together and make this happen. Everyone agreed that they will send Bettje their screen names so that a list of those in the group is maintained by Bettje and Deb.

<Susan Gould> Yvonne I spoke to the same people at NORD you spoke with, they emailed me information and contacts on how to organize.

<Yvonne> As to becoming a part of the NORD research Ivonne agree to "post {the form} on our website and
they can download and print." So everyone can post their entry to NORD. Ivonnw posted her email
address or screen name -- DOGWALKER@PRODIGY.NET -- so that everyone can forward to her their own email address (screen name)

NOTE: who is going to track the entries to NORD? Yvonne?

<Jocee>        Proposed that "the form should be filled out by 1 Person representing our "organization" and that an organization should be created.

NOTE: Because there was no corum (not enough people in the room) it was proposed that Rich become temporary President. He indicated he would discuss with family and return a response.<George and Dee De> agreed to assist Rich with this project should he accepted.

<Susan Gould> Because "Susan has a wealth of experience in nonprofit health organizations and we are fairly well        connected", it was proposed that she formulate a plan directed to approaching organizations and others willing to provide support for FMD. We have already put together a high level plan that we would be willing to document and sent to the group...We have a lot more information to collect before even setting our objectives however at a high level."

<Susan Gould> This is Rich...if I may have the floor for a minute it would be appreciated.

1. We must file as a nonprofit organization in order to formally organize and be recognize by other organizations.

2. We need to join NORDs list.

3. We need to begin to find physician sponsors [sponsor is someone who will coach us through the medical community, sit on our board...basically bring Down walls for us]....Susan and I have a few we would like to approach. We will need a sponsor to promote and validate our disorder.

4. Begin to build a physician network where in the physicians educate one another.

5. You guys have done a fantastic job with the website. Once we receive nonprofit status, we would have the ability to begin to gather patient statistics.

<Celeste> We discussed the 5 points proposed by Rich and each task was taken by specific people. The next phase is how do the points get accomplished. Each of those projects will require everyone's assistance and support. We would all benefit if everyone proposes a plan as to how these points would be accomplished and when the proposal would be implemented. All the information would be posted in the site and at the Yahoo site.

Further discussion:

<Patsy> Provided information that information Social Security has recognized this as a disability

<Susan Gould> We need to stay away from the term FMD in our name, it's commonly known as Foot and Mouth Disease! Rich proposed "International Fibromuscular Dysplasia Foundation"

<Jocee> Suggested that "...and if we do our job right, FMD will become commonly known as Fibro Muscular Dysplasia"

<Susan Gould> I can check with NORD about what name to use, foundation, agencgy, organization, society etc...

<Yvonne> reminded everyone to send email address (screen names) please send to

NOTE: Because this is our fist chat and people volunteered quickly, I left out the names of those who volunteered on purpose. After some thought, those who volunteer should speak up again and set the record firm. There were 14 persons present and participating. Others chose to enter the chat and leave without providing input.

Next scheduled meeting will me JANUARY 6 -- HOWEVER, meeting in the chat room anytime would be beneficial to all as we brain storm aout the progress we want to make.

Further, I strongly suggest that we consider a PURPOSE statement as we head toward creating an Organization. Something for all of us to think. Others not in the chat room that wish to participate, please feel free to contact the "list" coordinator DOGWALKER@PRODIGY.NET) or myself (ccdquarcini@aolcom)

Oh, I volunteer to be Chief of Staff.


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