~

[Guest guest]

I am so sorry for your loss. It must be very difficult to lose someone to this

or any disease. 

I am happy that we were able to help you in some small way. That's the reason

for our existence. To enlighten, inform, and be supportive.

I wish the outcome could have been different.

If you would like we could add your sister's name and a short biography to out

Memorial pages.

Just sent the information to me, or , or Bob, and once the site is ready to

be updated we'll ad your sister's profile.

With sadness

Cat

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Thursday, September 8, 2011 7:42:21 AM

Subject: RE: Updating Still's Group Member Information Files

 

My name is Vizcarrondo. I wish to be removed from this group at this

time. I joined this group so I could learn from everyone so that I could help my

sister who suffered from this disease. This year on July 18th my sister Esther

passed away after suffering for the past four years. May God rest her soul and I

want to thank everyone for all the ideas and info I have taken from your posts.

God bless you all and please never give up. Thank you for letting me be apart of

this group though I've never had an opportunity to join in on the chat because

of the hours, I always caught up the next day and read your inspiring messages.

Take care of yourselves.

Updating Still's Group Member Information Files

Hello,

It's been a few years now and it's time to update our member information files.

Please note that we are asking our members to fill out our information form and

read the Code of Conduct and List Guidelines. Be sure and check that you agree

below so that you can remain a member of the group.

If you no longer wish to remain a member of the group, please send me an email

stating this so that we can remove you from the group.

We enjoy your participation and thank you for taking the time to help us.

Just copy, paste and return the form below to this address by October 31st,

2011, please.

willowmelt@...

We are a restricted group and you MUST share some specific information in order

for your membership to continue. Your personal information is NOT shared with

anyone outside of the International Still's Disease Foundation Inc. Board of

Directors. It is used for statistical and informational purposes only, as well

as an occasional greeting card or gift.

Medical professionals are welcome to join; however, you MUST notify the

moderator(s) of your credentials first and wait until your credentials are

verified if you would like to use your profession as part of your participation

within the group.

YOU MUST SCROLL TO THE END OF THIS DOCUMENT AFTER READING AND CHECK THE BOX THAT

SAYS YOU HAVE READ AND AGREE TO THE RULES AND GUIDELINES TO CONTINUE YOUR

MEMBERSHIP.

* ONE ASTERISK INDICATES: THE INFORMATION REQUESTED IS MANDATORY, FOR THE

MEMBERSHIP TO CONTINUE, THE ACCEPTANCE OF THE LIST GUIDELINES AND CODE OF

CONDUCT.

PLEASE READ AND CHECK AT THE END OF DOCUMENT.

YOUR INFORMATION:

*FULL NAME: Bram Cast-Hecht

*DATE OF BIRTH 3/27/57

*PREFERRED EMAIL ADDRESS:BramNin@...

*POSTAL ADDRESS: 2210 Margarita Dr SE Rio Rancho New Mexico 87124

PREFERRED PHONE #:

HOW LONG SINCE THE ONSET OF STILLS? *YEAR OF DIAGNOSES? 2000

(Those with the disease)

IS THE STILL'S IN REMISSION AT THIS TIME? HAVE YOU EVER HAD A REMISSION?a semi

remission

DO YOU SEE A RHEUMATOLOGIST YOU WOULD RECOMMEND TO HELP OTHERS? IF SO,

YOUR PHYSICIAN(S) INFORMATION:

Dr. jhn Mccormick

GROUP OR NAME:

ABQ Health partners

ADDRESS:

5400 Gibson Blvd. Albuquerque NM 87108

PHONE:505-2627248

ANY OTHER STILL'S INFORMATION YOU WOULD LIKE TO SHARE SUCH AS ADDITIONAL

DISEASES/ILLNESSES/MEDICATIONS?

Other condition: Chronic Pancreatitis(Pancrea divisum)

FAMILY LIFE/HOBBIES/INTERESTS/TALENTS/PREVIOUS OR CURRENT EMPLOYMENT:

Not employed. Interests: Animals and music

CODE OF CONDUCT:

•Introduce yourself when you are new consider posting a " Herstory " or

" History " to the group, telling us about yourself, and your connection to Stills

Disease. You don't have to introduce yourself right away, it's fine to sit back

and read the posts and see how it all goes (this is called lurking by the way)

•Always include a Subject line in your message and make the subject line

meaningful. If you are replying to a message, but are changing the subject of

the conversation, change the subject line to reflect that. Include enough of the

original message to provide a clue as to context. Pay careful attention to where

your reply is going. Ask yourself if your reply is REALLY warranted!

•Some mail programs allow a signature somewhere in the e-mail, perhaps you

could use it to provide your personal E-mail address. Apparently there are some

programs that don't show the address of the poster easily. To make it easy for

everyone add your addy to the post somewhere.

•Ignore Provocation. Reply by private mail to any message that irritates you.

If you really can't follow that suggestion, then write a scathing letter to the

poster, not to the group/list. While it may be satisfying to get outside

support, carrying an argument onto a discussion group or support group is both

impolite and uninteresting to most of the other participants.

•Use of all capital letters is generally interpreted as SHOUTING.

•Be courteous, handle disagreements privately.

•Use private E-mail if you want to write things like " I agree " or " good post "

or " I liked your whatever " then send it directly to the other member. Use

private E-mail basically for anything that is not of interest to the whole

group.

•Above all else, remember that E-mail is about communication with other

people, when you compose an E-mail read it over before sending it and ask

yourself what your reaction would be if you received it!

•We cannot emphasize strongly enough, that no one wants to alter the wonderful

information, support, laughter, and tears that this list has been built upon.

LIST GUIDELINES:

1. Use the subject line. Put OT for OFF TOPIC and RELIGIOUS for such content,

and change as needed especially when replying to a digest message.

2. The moderator reserves the right to cut off discussion when it is no longer

constructive or related to the group's purpose. Off Topic posts are allowed

Please label off topic posts, " OT " in the subject line.

3. Try to keep messages short. Do not include the entire original message with

your post. Trim the original message to the pertinent part.

4. Members who consistently forget to trim message footers will be put on

moderation so that these sections can be edited.

5. Please consider which messages are of most interest to all members of the

list and which ones are better being sent privately.

6. Digest subscribers- Please cut and paste your message so that entire digests

will not be sent back to the list.

7. Please avoid the use of all Caps unless you are trying to emphasize a point.

Or unless you have difficulty reading smaller print. ALL CAPS HAS THE EFFECT OF

SHOUTING AT THE READER.

8. Sign your posts. This is good netiquette. Some people create a special

signature file that is a few lines long. You do not have to use your entire

name, a first name is fine. Continued unsigned posts will result in moderation

and rejected posts.

9. Flaming will not be tolerated. This includes but is not limited to, name

calling, personal criticisms or put downs. Members who flame will be put on

moderation at the list owner's discretion.

10. Delete posts of which you have no interest in. We are a diverse group.

Diversity makes us strong and interesting. Be considerate of fellow members.

11. Posting Links without moderator permission is NOT allowed.

12. No SELLING; SOLICITATION; INCLUDING BLOGS OR WEBSITE ADDRESSES; OR ANY GROUP

PROPOSALS WITHIN OR ON THE SUPPORT GROUP FORUM. " ANYTHING OF THIS NATURE MUST BE

THROUGH YOUR OWN PRIVATE MAILINGS.

13. THE MEDICAL