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