August 12, 2005
To create an alliance, to offer resources, and to facilitate the efforts of Carcinoidand other Neuroendocrine Tumor (NET) support groups, patients, and caregivers in North America
Sent: Thursday, August 11, 2005 9:16 PM
To: CARCINOID@LISTSERV.ACOR.ORG; CGL@yahoogroup.com
Subject: 2005 Carcinoid/NETS conference
Greetings from Philadelphia! Plans are moving right along for the Conference but we do have a reminder for those of you who plan to attend and have not registered or reserved a room. Our agreement with the Crowne Plaza is that they will block rooms only until August 23rd. That means you have only 12 days left to reserve a room. After that date the rooms will be released from our room block and the hotel may resell them. The rooms are $109 night plus tax. So you MUST reserve before the 23rd to get that rate.
If you read the agenda lately you will see a Friday evening reception has been added. Nancy O'Hagan, a fellow noid and president of the Caring for Carcinoid Foundation, has invited everyone who is attending to a reception immediately following the conference on Friday. It will be held across the street from the Crowne Plaza at Ballard Spahr Andrews & Ingersoll located at 1735 Market Street from 5:30-7:30 PM. Food and drinks will be provided.
Looking forward to seeing everyone in September.
The Philly Team
From: firstname.lastname@example.org [mailto:email@example.com]
Sent: Saturday, June 11, 2005 5:56 PM
Subject: NAAPNET By-laws
Sent: Thursday, March 17, 2005 8:50 PM
Cynthia, Carol-Anne, Jim, Linda, and Susan===========================================
From: firstname.lastname@example.org [mailto:email@example.com]
Sent: Saturday, March 05, 2005 8:18 AM
Subject: [CGL] PET Scan Project Totals
Congratulations to Everyone!
With sincere thanks,
The Steering Committee
Cynthia, Carol-Anne, Linda, Susan and Jim
We are happy to announce the NAAPNET 2005 Conference will be held on September 22, 23, 24th in Philadelphia, PA. The conference speakers will address not only Carcinoid tumors but also other Neuroendocrine tumors. We will supply all the information on Registration at a future date. So mark your calendars!
The Conference Committee
Sent: Friday, January 07, 2005 11:00 AM
Subject: [CGL] Call for a show of interest in hosting the 2006 National Conference for Neuroendocrine Tumors
CGLers: Greetings again from the NAAPNET Steering Committee.
In order for us to do one of our next major tasks---identifying a host area and support group(s) for putting on the 2006 national conference, about 21 months from now---we need to hear from you fairly soon whether your local support group wants to express SPECIFIC INTEREST IN HOSTING the 2006 conference.
We are starting early because it has become apparent from working with the Philadelphia group on its planning for the fall 2005 conference that a longer lead time helps for making hotel choices.
We have a good amount of financial support pledged (mostly from Novartis), and we are reasonably confident it will come through, but at this point it is not 100% guaranteed. Your group may want to start thinking through a contingency plan.
Therefore, we would like to receive***by Friday, February 18, 9 pm, EST,***a brief proposal expressing some interest on your group's part in hosting the next conference and demonstrating that you have been thinking carefully about how to go about it.
It would be helpful if you can include some preliminary information to share about---
Sent: Wednesday, January 05, 2005 7:45 PM
Subject: [ZTSC] invitation draft 1/5
From: Susan L. Anderson
Sent: Saturday, December 25, 2004 10:13 AM
Subject: On behalf of your NAAPNET Steering Committee: PET Appeal
NAAPNET Steering Committee
"The Zebra Team"
Sent: Tuesday, November 09, 2004 9:00 AM
Subject: Re: emails 003
Welcome to your third "official" communication from the ZEBRA TEAM!!!!
will notice, each message from the ZEBRA TEAM is recorded by year, and
sequential number of message in that year. It is hoped that in
the future, this will ease the referencing of projects, comments,
ideas, etc. for the entire membership.
One of the goals of this group, is to help streamline communication, and the flowing of ideas. Trying to get rid of duplicate emails, etc., and yet keep all lines of communication open was a top priority. Giving you, each member of the Carcinoid community, a specific avenue to communicate with the ZEBRA TEAM, and vice versa, was a main topic of conversation at our meeting. It was decided that a new, national email mailing list would be set up, hopefully consisting of each and every member of the Neuroendocrine Tumor family. Membership in this mailing list will be voluntary, not formed by existing groups or lists handing over their coveted membership information. Each and every communication coming from the ZEBRA TEAM, would be disseminated through this new list maintained by Susan Anderson, or through the existing Carcinoid Group Leaders (CGL) list maintained by Linda Silversmith, depending on the targeted audience. The ACOR, YAHOO and other online discussion groups will remain intact, providing the much needed forums for discussions amongst Neuroendocrine Tumor members. Information regarding this new national NAAPNET email mailing list will be coming your way shortly, as the many details to such an undertaking are being worked through.
If a member would like to send information to the ZEBRA TEAM, that can be done by addressing your email to: NAAPNETzebrateam@aol.com.
Since all information coming out of the ZEBRA TEAM will eventually go one of two places, either the national mailing list, or the CGL, please make sure that if you are a group leader, that you sign on to the CGL mailing list. If you do not, there is a very good chance that you will miss crucial communications, since these ZEBRA TEAM communiqués will no longer be posted on all mailing lists.
You may also notice that the term "Carcinoid" is being replaced very often by "Neuroendocrine". This is in response to the worldwide effort of awareness and education of Neuroendocrine tumors, of which Carcinoid is one. Even our 2005 conference next year will reflect these new perspectives.
For the near future, these ZEBRA TEAM notices are being put on all mailing lists, until the new National Mailing List can be set up. We are very eager to get this list into place, so that communication between the ZEBRA TEAM and our constituency can become a streamlined reality!!!!!
The ZEBRA TEAM
November 06, 2004 2:02 PM
Subject: ZT 04-006 2005 CONFERENCE
CONGRATULATIONS FROM THE
ZEBRA TEAM to Deborah Kilmartin and Anne Dolan and the
rest of the Philadelphia Support Group.... the 2005 Neuroendocrine
Conference will be held in Philadelphia, at the end
Watch for news updates from the Philadelphia group as plans fall into place!!!
the ZEBRA TEAM
November 05, 2004 7:52 PM
Subject: ZT 04-001 This is the first of continuing emails from the "ZEBRA TEAM"
This is the first of continuing emails from the "ZEBRA TEAM". The first set of communications to you will inform you of the happenings at our first face to face organizational meeting over the Halloween weekend. (13 1/2 hours of work including only two one hour meal breaks!!!) Subsequent to those emails, we will be communicating with you regularly concerning projects that we are actively working on, or areas where we can provide assistance or direction to projects that have already been set in motion by you. We will also be a conduit to you from the Carcinoid Cancer Foundation, our Physicians Advisory Board, and relay to you up to the minute medical news, etc.
As you know, this is a group of 7 volunteers that brings a wide array of experience to the table. We have experience in leading support groups, running list serves, owning and maintaining websites, running conferences, interfacing with pharmaceutical companies and supporting their education efforts, interacting with the Carcinoid Cancer Foundation, actively supporting the world wide efforts of Carcinoid/Neuroendocrine Tumor support and awareness, caring for carcinoid-stricken family members, and living the Carcinoid disease itself. All of these experiences and skills are coming together to provide organizational and leadership direction to the many support groups in the quickly growing Carcinoid movement, and to give more of a national voice to all individual members of the Neuroendocrine Tumor community. Eventually, we hope to see this voice exercised in lobbying efforts for better drug prices, more readily available drugs and diagnostic tests, better education for the medical community for diagnosing Carcinoid, and a stronger voice with dealing with insurance companies, etc.
In keeping with Doctor Woltering's vision for this group, and in following the footsteps of the European Neuroendocrine Tumor Society (ENETS), the official name of this group is "NORTH AMERICAN ALLIANCE FOR PATIENTS WITH NEUROENDOCRINE TUMORS" (NAAPNET). There is in the works a parallel group for the medical community only, and their name, as we understand it as present, will be NANETS.
Be on the lookout for the next ZEBRA TEAM mailing..... coming your way soon!!!