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Celeste
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(12/18/02 3:25 am)
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Organizational Committee Information note --

Hello all,

In response to Celeste re: how to handle new people, here is what I though I agreed to do re: new people that contact me directly,,,,

Until I respond to their email, explain that there is a support/information giving & gathering group of women, direct them to the fmdfaq site and get a response from them giving me permission to add them to the list of people with fmd I can't do anything with their initial contact information. When I do get permission to add them to the list, then I can send their information ( what ever emails I have received from them pasted together, name and email address ) out to the group. Obviously I will not add anyone who does not want to be added and will not break the confidentiality of that person by sending their email or names out to the group.

There will be times that I am unable for what ever reason to not access the computer/email and will be unable to respond immediately to some of these people. So far that has not proven to be a problem as the email is in my mail box and I get to it ASAP.

Sometimes weeks or months will go by with nothing coming in from new people and at other times I will get a batch all at once. With some of them a trust has to be built before they want to "join" a group or have their names/email address go onto a list. Most of us are computer literate and have no problem with "web sites".

There are still a lot of people out there who have a problem with plain old email. I have gotten requests to "mail" information due to lack of computer by people who are using a library computer to research this disease and found my blurb. There has to be a reason that they are contacting me rather than posting in a web site. Perhaps it is the person to person touch that feels safe for them, I don't know.

I don't feel comfortable with the idea of asking a new person's permission to post their email/condition on a web site in this initial contact and "getting to know you stage" I think that if they will allow me to put them on the group list that they will get enough information from the rest of the group and this will allow them to make the decision to "post" on their own.

Next, Jim, did you get the data sheet with the names and email addresses??

Comments welcome,
Anne


**************************************

Sounds like you have things at hand Anne. Its a bit late and I am a bit tired, so I will read this again tomorrow, but let me share this with everyone in the list you copied, and with you.

What is my role? I am working with a group of people whom I address as the "Organizational Committee" in an effort to organize others affected by FMD, into an organization that is respected, recognized, and celebrated by research organizations such as NIH, medical associations such as AMA, etc.

Several people who participated in the CHAT gathering of DEC, and I, have continued to build this organization through thought building, idea management, and simply trial and error.

Why build the organization? So that it can stand during its infancy and be recognized by the National Organization for Rare Disorders, Inc. (NORD); the National Institutes of Health; and the American Medical Association through a professional presentation of critical parts within the organization.

Who are these people in the Organizational Committee? Those who volunteered for the positions. Who are working full time jobs and are committed to see this organization happen. I nominated you and Jocee, who incidentally, has been working in all aspects of the organization at the same time as the areas she volunteered for while holding a full time job and she does not even have FMD, her mother does.

To be recognized by the NORD, an organized group must complete and submit a form. The form, as everyone should know, is posted in the site -- www.fmdfaqs.com -- and some have received the forms directly.

The form requires organizational officers, a President for example. I AM NOT THE PRESIDENT of the organization. An attendee of the Chat, Richard and his wife Susan, who have experience in the NORD submission and strong business backgrounds were nominated as President, and when Rich is ready, he and his wife will make a public acceptance. Until then, I am working to meet the requirements of the NORD through the efforts of those who attended the CHAT, stayed through the hour, and volunteered for parts.

It has been the goal, as you know since you have been in the loop the entire time, that each of those persons who are in the Organizational Committee, prepare a proposal to be presented to everyone on the CHAT of Jan 10 -- at the site -- so that everyone is in the loop then.

Why wait till then? Because it would be incredibly excessive to write to all these folks about small details and conversations that have nothing to do with the final plan.

Are the decisions final? NO. At the time of the CHAT, there IS discussion as to the presentation, and comments taken. It is at that time that changes are made as necessary.

Is creating an FMD Organization a good idea? YES and I believe most people here will agree.

In conclusion, your proposal that we agreed should go to Rich and the Organizational Committee, sounds like you are making a great effort to pull your area together and it sounds great. The points in the paper you have here, which appear to be final, should be discussed with the Organizational group. Don't you think? Unless of course, everyone in this list wants to be in the loop for each and every one of our discussions.

I have to admit that emails, at times, read differently that the intent of the sender. However, this is what I am reading -- if you feel that you should keep your "list" separate and apart from the efforts made to create the organization, that is a decision you have to make, and everyone in the list you posted here, makes their own decisions. Having said that, FMD sufferers and family are contacting and interacting with the Yahoo FMD group, another site is the making in Canada, and the FMD site created here, has over 3,000 hits; FMD sufferers are not exclusively contacting you.

BUT.....If any of you want to volunteer for any aspect of this organization, you are welcomed. Any one interested in obtaining more detailed information in reference to the organizations purpose, goals and direction, feel free to contact me, or visit the site for information as it is created, or come to the next CHAT meeting. Alas, enough said.


Celeste

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