Updated:  August 12,  2005


The Mission Statement for the newly formed group (Sept. 2004):

To create an alliance, to offer resources, and to facilitate the efforts of Carcinoid

and other Neuroendocrine Tumor (NET) support groups, patients, and caregivers in North America



From left to right: NAAPNET Steering Committee 2004 - 2005
Susan Anderson ..... Arizona ..... Vice Chair (Resigned June 16, 2005)
Carol-Anne Wilson ..... Texas ..... Chair
Jim Weiveris ..... New Jersey ..... Secretary
Linda Silversmith ..... Maryland ..... Treasurer
Cynthia Marrs ..... Oregon ..... Member (on leave of absence)
===========================================
NEW - Interviews on video made at the 2004 New Orleans Carcinoid Conference - NEW  
 Some of the things discussion are answers to questions commonly asked by newly diagnosed patients
Eugene A. Woltering, MD., Gregory D. Espenan, M.D., Daniel Frey, M.D.
Susan Anderson, Carol-Anne Wilson, Jim Weiveris
Click here for the video interviews
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From: Philly2005Conf@aol.com [mailto:Philly2005Conf@aol.com]
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

  ===========================================

-----Original Message-----

From: zebrateam@naapnet.org [mailto:zebrateam@naapnet.org]
Sent: Saturday, June 11, 2005 5:56 PM
To: ZebraTeam@naapnet.org
Subject: NAAPNET By-laws

The Naapnet team would like to announce that the bylaws adopted by Naapnet
in March of 2005 can now be viewed by going to www.naapnet.org and
clicking on the link for the LEGAL section.

Please note that the bylaws of NAAPNET were constructed with the best
interests of the entire Carcinoid/NET community at heart, and to the best
of the team's ability. We realize that not everyone will agree with all of
the decisions made. If you do not agree with some choices, then please
note there is a procedure for amending the bylaws. We also offer an
annotated version so that everyone may better understand why certain
choices were made.

Please review both the bylaws and the notations to see if they answer your
questions. 

We are, of course, willing to answer any reasonable inquiries
-- simply e-mail us at ZebraTeam@naapnet.org

Warmly,
The NAAPNET 2004-2005 steering committee
Carol-Anne, Cynthia, Jim, Linda, and Susan
=========================================== 

-----Original Message-----

From: ZebraTeam@NAAPNET.org [mailto:ZebraTeam@NAAPNET.org]
Sent: Thursday, March 17, 2005 8:50 PM 

ANNOUNCING...
The 2005 steering committee for NAAPNET (the North American Alliance of Patients with Neuroendocrine Tumors) is pleased to announce the debut of  the NAAPNET website at <http://www.naapnet.org/>http://www.naapnet.org/
We hope that this website will be a useful resource for patients, caregivers, and local and e-mail support groups dealing with carcinoid and related neuroendocrine tumors.
Please be aware that this website will be growing and changing. We are already working on several areas, and we invite your suggestions and otherinput through the "contact us" links provided at <http://www.naapnet.org/>http://www.naapnet.org/
 
Provisions have been made on the NAAPNET website for support groups fromeach state and province in North America to be listed. If when you look atthe website, you find that your local support group's information isincomplete or is missing, please follow the directions below our names toprovide that information for us to post.
Sincerely,

Cynthia, Carol-Anne, Jim, Linda, and Susan

===========================================  

-----Original Message-----
From: naapnetzebrateam@aol.com [mailto:naapnetzebrateam@aol.com]
Sent: Saturday, March 05, 2005 8:18 AM
To: CGL@yahoogroups.com
Subject: [CGL] PET Scan Project Totals

Congratulations to Everyone!

You have proved the generosity and enthusiasm of everyone by working together <>for a common goal.

Our appeal for donations toward the startup of the 5-HTP PET Scan project has far exceeded our projected goal of $12,000.00. Thanks to your efforts, we collected a total of $15,165.00. This money has been turned over to The Carcinoid Cancer Foundation. The Foundation has already made contributions to the Cornell University Medical Center in New York City for this project.
The original costs projection was approx. $30,000.00. The donations everyone here made have been matched by the Foundation, in addition to other donationspreviously received through other avenues.
The excess funds are being held in a special account by the Foundation and will be used only for this project. Exactly how they will be used will bedecided as work progresses. So far, discussions have included handling any unexpected development costs, travel vouchers for those needing the scan, or helping to start another PET Scan Project site.

We want to thank the California Carcinoid Fighters and the Carcinoid Cancer Awareness Network for processing the donations. Thanks also to CCAN who absorbed the costs from PayPal for donations made through there.

We again want to especially thank each and every one of you for your donations and your dedication. 

With sincere thanks,

The Steering Committee

Cynthia, Carol-Anne, Linda, Susan and Jim

=========================================== 
Date:    Fri, 11 Feb 2005 19:43:45 EST
From:    Anne Dolan <Philly2005Conf@AOL.COM>
Subject: Philly 2005 Conference

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

===========================================

From: naapnetzebrateam@aol.com [mailto:naapnetzebrateam@aol.com]
Sent: Friday, January 07, 2005 11:00 AM
To: cgl@yahoogroups.com
Cc: ZTSC@yahoogroups.com
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---

        (1) the convenience of the host area for national and international air travelers and for local travel and sightseeing,
 
         (2) potential hotel sites and costs if known, and
 
         (3) your preliminary plans for the organization of the local  planning committee.
 
Any other ideas you have about conference format or anything else are welcome too.
Do not let the fact that your group may meet only once a month, stop you from expressing your interest!  You can always rescind that interest, but if we do not hear from you by Fri., Feb. 18, 2005, you will not be able to be considered as host of the 2006 Conference.

In a brief e-mail, send your reply to the Steering Committee at our general mailbox---

(mailto:NAAPNETZebraTeam@aol.com>NAAPNETZebraTeam@aol.com).

As a reminder, this year's Steering Committee members are Susan Anderson (Arizona), Cynthia Marrs (Oregon), Linda Silversmith (Maryland), Jim Weiveris (New York), and Carol-Anne Wilson (Texas).  The team is aiming to make its decision by March 1, 2005, to give the host group more time for early planning, such as identifying a hotel.

Thank you in advance for your participation.

===========================================

From: YerRolodex@aol.com [mailto:YerRolodex@aol.com]
Sent: Wednesday, January 05, 2005 7:45 PM
Subject: [ZTSC] invitation draft 1/5

 Happy New Year, Group Leaders!

We'd like to offer you an invitation.

Who:     Support Group Leaders from the North East/Mid-Atlantic region
What:          Open work session with the NAAPNET Steering Committee
When:         February 5, 2005  2:00 - 4:00 PM
Where:        Address TBA, Philadelphia, PA

The NAAPNET Steering Committee will be meeting in Philadelphia February 4-6, 2005. The majority of our afternoon work session on Saturday (2/5) will be focused on providing support to local groups and patients, as well as gathering requests from those groups. We'd be honored if regional group leaders would like to join us! If you are interested, please let us know at NAAPNETZebraTeam@aol.com by January 18. Invitations will be sent on a first come, first served, space available basis.

Your NAAPNET Steering Committee,
Cynthia, Carol-Anne, Linda, Susan and Jim

===========================================

From: Susan L. Anderson [mailto:SunnySusan@cox.net]
Sent: Saturday, December 25, 2004 10:13 AM
To:
Subject: On behalf of your NAAPNET Steering Committee: PET Appeal

PET Appeal Goal!
Dear NET Patients, Caregivers, and Friends,
Well the results are in, and, YES, we have done it! Noids are amazing! Not only have we reached our goal for the PET Appeal, but we have superceded it! We raised more than our goal amount! Can you believe that?? WOW!! Well done, everyone! 

Our hats are off to you all--each and every one. By taking the time and making YOUR contribution, our goal has been reached. Every penny raised will go to the PET Appeal Project . . . and when we see the final figure, the NAAPNET Steering Committee will decide what to do with the monies over and above the goal to still assist the PET Appeal Project. There are several good options to choose from and we are still working on that.
We hope you realize what this means in Carcinoid/NET history. Yes, we've all known for a long time that if we want our cancer properly treated, that in many ways we are going to have to take a lot of responsibility ourselves. By dealing with this PET Appeal from the grassroots level, we have made a very strong statement that we will not go quietly into the night, and that we are willing to do whatever it takes to be well and help others yet to be diagnosed to enjoy optimum health.
The entire NET community can look back to this project with satisfaction, knowing that as a united group, we have shown what we can do when we all pull together.
We NAAPNET Steering Committee Members are excited and hope you are too! What a wonderful way to end this year . . .your generosity and response to this appeal will mean that many with unknown primaries will now have another option and hope for discovery and improved or more appropriate treatment. What a wonderful Holiday accomplishment.

We are in awe of the results and THANK YOU ALL for your participation and willingness to help, despite difficulties for so many.
A very humble thanks to you all. Thank you.
Cynthia, Carol-Anne, Jim, Linda and Susan
Your NAAPNET Steering Committee

===========================================

From: Susan L. Anderson [mailto:SunnySusan@cox.net]
Sent: Tuesday, November 16, 2004 11:17 AM
To:
Subject: Comm-Con 04-11-05: updating you on conference and communications
This message is about a new steering committee and the 2005 conference.  (in case this message missed you all earlier)

THE COMMITTEE: When a steering committee was formed from among the carcinoid group leaders attending the Sunday morning CGL meeting at the September 2004 New Orleans conference - - to serve until the next national  conference - - everyone jokingly called it the Zebra Team, and that's how  we got our nickname.
The Steering Committee was asked (1) to pick locations for upcoming conferences and (2) to think about how to further Dr. Eugene Woltering's dream of some kind of national coalition of carcinoid and other neuroendocrine tumor patients and support groups. Hence came our more formal name, North American Alliance of Patients with Neuroendocrine Tumors, or NAAPNET.
This committee will be relying heavily on patient and caregiver input, and  will be disseminating information to patients and groups regularly. If you  are the leader of, or otherwise involved in the leadership of a support  group, please join the CGL Yahoo group. You can email CGL-subscribe@yahoogroups.com. This groups will be our primary avenue to get information to groups, and is an excellent forum for networking with other group leaders.
We have established an email address for the committee. It is NAAPNETZebraTeam@aol.com. Please feel free to write to us at that address if you are having trouble joining CGL, or if you are an individual wishing  to offer your input to the committee. We want to hear from you!
THE CONFERENCE: Congratulations from the NAAPNET Steering Committee to the  Philadelphia Support Group. Deb Kilmartin, Anne Dolan and their team are already hard at work to make 2005 all we've come to expect from one of these events. Watch for updates from Philly as plans fall into place!

Warmly,

NAAPNET Steering Committee

"The Zebra Team"

===========================================

Sent: Tuesday, November 09, 2004 9:00 AM
To:
Subject: Re: emails 003

Hello all-

Welcome to your third "official" communication from the ZEBRA TEAM!!!!

As you 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!!!!!

Warmly,
The ZEBRA TEAM

=========================================== 

Sent: Saturday, 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 Tumor Conference will be held in Philadelphia, at the end of September 2005.

Watch for news updates from the Philadelphia group as plans fall into place!!!

Warmly,
the ZEBRA TEAM

=========================================== 

Sent: Friday, November 05, 2004 7:52 PM
Subject: ZT 04-001 This is the first of continuing emails from the "ZEBRA TEAM"

 Greetings Everyone!

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!!!

Sincerely,

The ZEBRA TEAM
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