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CARCINOID CANCERA rare form of "slow-growing" neuroendocrine cancerSusan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness |
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If you are
starting a support group in your area and
would like to be listed, * * * * * * * * * * * *
In Jan. 2011 I
starting writing my book,
When the books are ready I will let everyone know. * * * * * * * * * * * * AOL
Spam
filters are interfering with delivery of Carcinoid-related
EMail. Click
here for further information
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Carcinoid's Blog
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The Carcinoid Cancer Foundation (CCF) has existed for close to forty years. In 1997 it produced its first website which made available to the general public and the medical community information about carcinoid and related neuroendocrine cancers. The incidence of these rare cancers is 3 new cases diagnosed per 100,000 people in the United States which equals approximately 8000 new cases per year. The philosophy of CCF has always been to disseminate accurate, up-to-date information about diagnosis, treatment, and surveillance options to maximize survival and quality of life for those individuals suffering with these diseases. We strive as the multitude of carcinoid/NET national and international experts have been doing (some for decades) to find a cure. In the meantime we must focus on educating the medical community to find the best diagnostic and treatment options available. CCF has and is working closely with both US and international medical experts and support groups. Many people may not be aware of all the various activities in which the Carcinoid Cancer Foundation is involved. This first newsletter enumerates CCF's role in patient advocacy, research, and dissemination of medical information and gives a summary of accomplishments in the year 2005 and plans for the year 2006. Without your collaboration our accomplishments could not have been possible.
Metro NY Carcinoid Support Group
(MNYCSG)
This support group in the Metropolitan NY area includes Manhattan , NJ, Long
Island, Westchester
and part of Connecticut. If you are interested in
participating and to learn more about these
support groups contact the
coordinator for each chapter or for more information about the
Metro
NY
Carcinoid Support Group. The Metro NY Carcinoid Support Group
newsletters can
also be accessed on the group's web site.
Contact the MNYCSG tri-state
coordinator
Jim Weiveris
Caring4Noids@aol.com
Web site:
http://www.carcinoid.us/
Long Island Chapter
Carcinoid Cancer Awareness Network, Inc. (CCAN)
For more information about this support groups activities contact:
Maryann Wahman at Carcinoidaware@aol.com
http://www.carcinoidawareness. org It is with great pleasure that CCAN announces the 2009 National Patient
Conference video is now available to view on our web sitewww.carcinoidawaren
ess.org . Click on 09 National Conference video link.Watch for the announcement of The 6th Annual LI Conference video t
o be posted some in the next week or so. .Carcinoid Cancer Awareness Network
CCAN Inc
2480 Hull Ave
N. Bellmore NY 11710
516 781 7814
New Toll Free # 1 866 850 9555
carcinoidaware@aol.com
November is Carcinoid/NET Cancer Awareness Month in New York State. Come celebrate with us!
Don't forget to visit to our website www.carcinoidawareness.org
New Jersey Carcinoid Cancer Network
(NJ-CCN)
The NJ
Carcinoid Cancer Network web site:
http://www.NJCarcinoidNetwork.org/
Meeting: Woodbridge Main Public Library, 1 George Frederick Plaza,
Woodbridge, NJ 07095
For more information contact:
Jim Weiveris 609-812-9294 or
Caring4Noids@aol.com
or Judy Golz mjmkgo@aol.com
NORTH CAROLINA
Noids in the Carolinas
Covering both North Carolina & South Carolina
Contact: Karen J. Connell, 910-545-7513
email:
NCZEBRAGIRL12@aol.com
Hampton Road VA Carcinoid/NET Support Group
An informative educational group focused on carcinoid and other
neuroendocrine
tumors and cancers, consists of individuals and organizations
from the patient,
advocacy, and medical communities throughout Hampton Roads,
which is also
known as Tidewater. Friends and family of patients with these
tumors and cancers
seeking support are encouraged to join.
Please contact:
HRVaCarcinoidGrp@yahoo.com for more information
OHIO
The Ohio Carcinoid Support Group meets monthly on the third Saturday of teach
month
in Westerville, Ohio (a northern suburb
of Columbus, Ohio). In addition to providing
support for carcinoid
patients and their carekeepers and giving everyone an opportunity
to speak about their concerns, each meeting has a speaker speaking on topics of
interest to
carcinoid patients.
Contact:
Jayne Beck, Columbus, OH, 614-847-1311
mstoast@msn.com
PENNSYLVANIA
Hershey/Harrisburg
Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN),
PCCAN provides support and education for carcinoid/ NET patients and their
advocates.
Most (but not all) meetings are held Sundays,
2 -- 4 pm at the Hershey Medical Center.
Be sure to confirm the time
and location at
http://www.pccan.net. Also
check our
website for information on carcinoid/NET related activities in or near
Pennsylvania.
Contact: Teresa Lanza, ph: 717-576-5095 or
CarcinoidSupport@juno.com or see web site
http://www.pccan.net
On-line communication and support group:
PCCAN-subscribe@yahoogroups.com.
Read about Tereza Lanza's commitment to educate the carcinoid community
Her Blog address is
http://www.blogger.com/profile/07975567130568769758
Lancaster and Pittsburgh area groups are also
now in development.
Check the PCCAN website for more information.
http://www.pccan.net
Lancaster Carcinoid/NETS Support Group
For more information contact: Susan Nolt
susan288@verizon.net
Delaware Valley Carcinoid
Connection
A
New Group Supporting Carcinoid and Neuroendocrine
Tumor Patients and Their
Advocates
First meeting
was held Jan. 20, 2008.
For meeting schedule and location visit their website
http://www.phillycarcinoid.org/
Contact Suzi F. Garber (Founder, patient and advocate) at
info@phillycarcinoid.org
RHODE ISLAND
New England Carcinoid Connection, Inc. (NECC)
NECC is a non-profit organization with the sole purpose
of providing awareness, education and support to the New England
Carcinoid/Neuroendocrine community. (The six New England states are: CT, ME,
MA, NH, RI and VT). New England Carcinoid
Connection, P.O. Box 366282, Boston, MA 02136-0024, contacts:
Anita O'Brien at
nitaobrien@comcast.net
Nancy Hawkins at
ndhawk@suscom-maine.net
Jane Lombardi at janelombardi@aol.com
Visit the website:
http://www.carcinoid-newengland.org/
SOUTH CAROLINA
Noids in the Carolinas
Covering both North Carolina & South Carolina
Contact: Karen J. Connell,
NCZEBRAGIRL12@aol.com
Phone: 910-545-7513
TEXAS
Amarillo
Amarillo Area Carcinoid Support Group
New informal support group has formed.
First meeting was April 12, 2007
Contact: Lynda Barksdale
bronco75@earthlink.net
Austin
THE CENTEX
CARCINOID FIGHTERS
This support group meets on the fourth Saturday of even months, for those in the
Austin and
Central Texas area. For more information contact:
Jude Filler at: judefiller@hotmail.com or
Ann Meyer at: ameyer@swrcc.com
phone: 512-421-4120
at Southwest Regional Cancer Center
Dallas
CARCINOID CANCER TEXAS SUPPORT (CCTS)
A support group for people living with, affected by or interested in Carcinoid
Cancer, it's treatment and effects.
They offer support and education for
Carcinoid survivors, family and friends. Meet on the
second Saturday
of
every month from 11 a.m. to 1 p.m., Baylor Hospital, Dallas.
For information visit the web site
http://www.carcinoid-tx.org/home.htm or
contact Carol-Anne Wilson, Plano, TX or
carolanne52@gmail.com
Houston
Group meets quarterly.
If in the area and interested please contact
Jan Peine, email:
carcinoid@comcast.net
San Antonio
Meet on the fourth Saturday of the odd months (Jan., March, etc.) at the
Friends
Meetinghouse at 7052 Van Diver in San Antonio.
Contact Catherine Jett datchij@yahoo.com
West Texas
Midland, Odessa, Lubbock, Abilene, and San Angelo
Contact: Sarah Rees
sarahjanerees@yahoo.com
VERMONT
New England Carcinoid Connection, Inc. (NECC)
NECC is a non-profit organization with the sole purpose
of providing awareness, education and support to the New England
Carcinoid/Neuroendocrine
community. (The six New England states are:
CT, ME,
MA, NH, RI and VT).
New England Carcinoid
Connection, P.O. Box 366282, Boston, MA 02136-0024, contacts:
Anita O'Brien at
nitaobrien@comcast.net
Nancy Hawkins at
ndhawk@suscom-maine.net
Jane Lombardi at janelombardi@aol.com
Visit the website:
http://www.carcinoid-newengland.org/
VIRGINIA
Capital Area Carcinoid Survivors
(CACS)
A patient-run support group formed in September 2001 for DC, VA, MD,
and eastern USA. Patients, their families and friends meet monthly
on Saturday 10 a.m. to 12 noon at Life With Cancer Family Center
in Fairfax, Virginia For info call 703-255-0519
Bea Lehming -
blehming@gmail.com Mitch Berger -
mitchmberger@msn.com
Hampton Road VA Carcinoid/NET Support Group
WASHINGTON
PACIFIC NORTH WEST CARCINOID SUPPORT GROUP
(PNW) -
This support group includes members from Vancouver, British Columbia,
Idaho,
Oregon,
Washington state and neighboring states or Canadian
provinces without a
support group.
Meeting are usually held twice a year
on a Saturday in Issaquah (east of
Seattle).
For additional information
please contact:
Corie Dean
cadean@natpipe.com
WASHINGTON, D.C.
Capital Area Carcinoid Survivors
(CACS)
A patient-run support group formed in September 2001 for DC, VA, MD,
and eastern USA. Patients, their families and friends meet monthly
on Saturday 10 a.m. to 12 noon at Life With Cancer Family Center
in Fairfax, Virginia For info call 703-255-0519
Bea Lehming -
blehming@gmail.com Mitch Berger -
mitchmberger@msn.com
********************
Mildred “Millie” Kowalski, of Novartis Oncology announced at the
Carcinoid Conference, in New Orleans, 9/22/2012 that I, Susan Anderson,
am the recipient of the 2012 Warner Advocacy Award. I was sorry that we
were unable to attend. I am honored and thrilled to receive this very
meaningful award! Dr. Richard R. W. Warner, at my request, accepted
this award on my behalf.
Susan L. Anderson, or "Sunny" Susan as she's affectionately known, has dedicated her life to people affected by carcinoid/neuroendocrine tumors (NETs) and has become an energetic advocate for, and educator of, the disease. Her journey began on May 10, 1995, when she was diagnosed with carcinoid cancer after an 8-year-long battle through one misdiagnosis after another.
Susan immediately began researching the disease and soon learned there wasn't much information available about NETs. Many doctors believed patients with NETs had a short time to live. Born with a self-proclaimed "type A" personality, Susan refused to accept the supposed facts. She says, "I was told by every doctor to 'learn to live with it.' Probably the average person would accept that. I refused to and because of that I'm still alive."
Through her research, Susan discovered Monica Warner's website for the Carcinoid Cancer Foundation. From that moment on, Susan Anderson, Monica Warner, and Dr. Richard Warner formed a team determined to bring attention to this uncommon disease and advocated tirelessly for patients everywhere.
Recognizing the need for greater patient support, Susan created the first website about NETs by a patient, which celebrates its 15th anniversary this year. The site, carcinoidinfo.info, continues its success in assisting people affected by the disease, and has more than 380,000 visitors. In addition to this "labor of love," Susan has dedicated her time to personally answering more than 100,000 e-mails, assisting patients and caregivers from around the world. Susan's in-depth relationships within the carcinoid/NET community even allow her to refer international patients to support groups in their respective countries.
Susan has attended numerous conferences throughout the world as a guest speaker, including the first International Meeting of Patient Self-Help Groups in Berlin, Germany. One of her fondest memories is from 2009, when Dr. Richard Warner invited Susan to take part in a 12-person panel of patients with carcinoid cancer at the Patient Support Advisory Board meeting in New York. When not attending conferences, Susan participates in many boards and support groups, some of which she has founded.
"Sunny" Susan has her nickname for a reason. Each step of her journey has been accompanied by unwavering optimism, determined energy, and an incredible zest for life. It makes sense that her daily goals are to "have some good 'belly laughs,' assist others, and live each day to its fullest enjoying each and every one."
Susan is honored to share recognition alongside the late Monica Warner, the pioneer of Patient Advocacy for NET patients who was also a dear friend. The recognition also extends to amazing patient advocates everywhere, including Maryann Wahmann and Jan Naritomi-Hart, the 2010 and 2011 Warner Advocacy Award recipients, respectively.
Please visit the Warner Advocacy Award Guest Book and leave a message congratulating our 2012 winner.
Novartis Oncology Affairs and Patient Advocacy provide support to patients through an array of programs and services
The NET Alliance is a Novartis Oncology initiative to help improve outcomes for patients with NETs
AUSTRALIA AUSTRALIA AUSTRALIA AUSTRALIA
Become a Friend of the Unicorn Foundation ( http://
Launched February 2010 - Our New Website -http//
See our new patient support groups in both NSW & ACT
Sydney Neuroendocrine Tumour (NET) Educational/Support Group Meeting
:
Wednesday, April 14, 2010
Time:
5:00pm - 7:00pm
Location:
North Shore Private Hospital (Ground Floor Conference Room)
Street:
Westbourne Street, St Leonards (Sydney)
Neuroendocrine tumour (NET) and carcinoid
patients, carers and interested clinicians are
invited to come and learn about the latest happenings in the
management of NETs
and to share their experiences at our new Sydney
education/support group. All welcome!
Topic - Recent Research in NETs
Speaker - Dr Anthony Chambers, Endocrine Surgeon
Dr Chambers has recently returned from Canada after completing a
surgical fellowship in
Calgary with some of the top doctors in NET management. He is
now working back in Sydney
at St Vincent's Hospital, Darlinghurst and will be presenting to
us on recent and new research in NETs.
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Check the web site of Eric for information:
http://www.moonhaven.com.au/eric.htm
and
Carcinoid Tumour
Forum Australia http://carcinoid.tblog.com
:
Wednesday, April 14, 2010
Time:
5:00pm - 7:00pm
Location:
North Shore Private Hospital (Ground Floor Conference Room)
Street:
Westbourne Street, St Leonards (Sydney)
Sydney Neuroendocrine
Tumour (NET) Educational/Support Group Meeting
Neuroendocrine tumour (NET) and carcinoid patients, carers and
interested clinicians are
invited to come and learn about the latest happenings in the
management of NETs
and to share their experiences at our new Sydney
education/support group. All welcome!
Topic - Recent Research in NETs
Speaker - Dr Anthony Chambers, Endocrine Surgeon
Dr Chambers has recently returned from Canada after completing a
surgical fellowship in
Calgary with some of the top doctors in NET management. He is
now working back in Sydney
at St Vincent's Hospital, Darlinghurst and will be presenting to
us on recent and new research in NETs.
AUSTRIA AUSTRIA AUSTRIA AUSTRIA
Netzwerk Neuroendokrine Tumoren (NeT) e. V.
is a big patient group for
patients with NET,
for their relations and for practitioners. It is growing every day. In this
moment we have
600 members. We are very acitve in Germany, Austria
and Switzerland.
The address of our website is
www.netzwerk-net.de
Best regards:
Katharina Mellar
1. Vorsitzende
Netzwerk
Neuroendokrine Tumoren (NeT) e. V.
Geschäftsstelle:
Netzwerk Neuroendokrine Tumoren (NeT) e. V.
Wörnitzstr. 115a
90449 Nürnberg
Tel. 0911 / 25 28 999
Fax 0911 / 2 55 22 54
Email: info@netzwerk-net.de
web site:
www.netzwerk-net.de
CANADA CANADA CANADA CANADA
The Carcinoid -Neuroendocrine Tumour Society Canada (CNETS CANADA)
This was first organized in October 2002
as The Canadian Carcinoid Cancer and NET
Support Team (CCCNST)
CNETS-Canada
To all Carcinoid fighters, their support persons who live in Canada, and in
areas near the border, including Upper New York State, as well as any passing
through; this support group gives an opportunity for fellowship, round table
discussions, and information sessions regarding Carcinoid.
For information about our next support group meeting please email:
Maureen Coleman at
maureenc@sympatico.ca
To join Canadian discussion group
Carcinoid-NETS-Canada
A Listser/Website dedicated for Canadians and their Neuroendocrine System
illnesses
To Join CLICK
HERE .
For information please contact:
Maureen Coleman, Toronto, Ontario, 416-544-8467
or email at: maureen@sympatico.ca
web site:
www.cnetscanada.org
We are the Carcinoid-Neuroendocrine Tumour
Society-Canada Everyone in Canada,
and nearby border US states, who is a
Carcinoid-Neuroendocrine Patient and /or significant
other, and/or special
friend or family member is welcome to become part of their local
Carcinoid-Nets
Support Group. We aim to listen, educate, advocate, support, and also enjoy
one
another’s company.
There is an on-line group for Canadians and some interested Americans.
carcinoidnetscanada@yahoogroups.ca
May 13-16, 2010, Vancouver International CNETS Canada Conference for patients and med professionals. NEW
The Vancouver Conference tentative program is now on the CNETS Canada website
This program will be instrumental in
moving the needs of the International Carcinoid NET patient community forward.
And we would love to see you in Vancouver. It is a really great place as the
Winter Olympics will demonstrate.
We feel that our program is 90% complete. We will add more information as we get it.
So please register for the Vancouver
International Conference online at
www.cnetscanada.org.
We can also help you register offline if you like.
Please just email
info@cnetscanada.org with questions or if you need help.
Dates are May 13-16, 2010.
Please go to
www.cnetscanada.org and register for the conference.
We only have room for a total of 370 people including faculty so you
may want to register before all the spaces are gone.
A number of people actually booked before this programme came out
and we thank you for your trust in our ability to generate an effective
conference.
Maureen Coleman, President, CNETS Canada
ATLANTIC PROVINCES
New Brunswick Carcinoid-Nets Support Group
Please contactNewfoundland Carcinoid-Nets Support Group
Please contactNova Scotia and Prince Edward Island Carcinoid-Nets Support Group
Please contact Colette Morrison physio@ns.sympatico.ca (902) 295-2955
QUEBEC
Montreal Area Carcinoid-Nets Support Group.
Please contact Nycky Thevenet nyckyschon@yahoo.com (514) 425-1734
ONTARIO
Toronto Area Carcinoid-Nets Support Group
Please contact Maureen Coleman maureenc@sympatico.ca, (416)-544-8467
Please contact Noreen Lebowitz lebo74@rogers.com (905)-731-8598London-Kitchener-Western Ontario Carcinoid-Nets Support Group.
Please contactOttawa-Eastern Ontario Carcinoid-Nets Support Group
Please contact Morley Dore barbandmorley@rogers.com (613) 725-3229
MANITOBA
Winnipeg Area Carcinoid-Nets Support Group
Please contact Silvia Steinhilber nswplas@mts.net (204)-757-4878
SASKATCHEWAN
Regina-Moose Jaw-Saskatoon Area Carcinoid-Nets Support Group
Please Contact Marlis Duff duff.marlis@prairiesouth.ca (306)-475-2838
Please contact Lynne Warden lynnemwarden@msn.com (306)-664-3419
ALBERTA
Calgary Area Carcinoid-Nets Support group
Please contact Joan Smart smartj@telus.net (403)-233-2031
BRITISH COLUMBIA
Kamloops Area Carcinoid-Nets Support Group
Please contact Dennis Robertson crackersdog@hotmail.com
Phone TTY is 250-274-7477Vancouver Area Carcinoid-Nets Support Group
Please contact
GERMANY GERMANY GERMANY GERMANY
Netzwerk Neuroendokrine Tumoren (NeT) e. V.
is a big patient group for
patients with NET,
for their relations and for practitioners. It is growing every day. In this
moment we have
600 members. We are very acitve in Germany, Austria
and Switzerland.
The address of our website is
www.netzwerk-net.de
Best regards:
Katharina Mellar
1. Vorsitzende
Netzwerk
Neuroendokrine Tumoren (NeT) e. V.
Geschäftsstelle:
Netzwerk Neuroendokrine Tumoren (NeT) e. V.
Wörnitzstr. 115a
90449 Nürnberg
Tel. 0911 / 25 28 999
Fax 0911 / 2 55 22 54
Email: info@netzwerk-net.de
web site:
www.netzwerk-net.de
Netherlands Netherlands Netherlands Netherlands
Dutch Carcinoid Support Group
This group is a section of the "Stichting Doorgang" for cancers of the
gastrointestinal track.
For additional information please contact:Teun Elemans
tn@EURONET.NL or visit the web site
CarciNor (the Carcinoid patients association in Norway) aims to act as
a support for patients
suffering from hormone producing tumors in the stomach,
such as carcinoids, endocrine pancreatic
tumors, adrenocortical cancer, etc.
The association also works to spread information about these
diseases
treatments, research methods and other matters of interest. CarciNor is
affiliated to
The Norwegian Cancer Society.
(Note: Information is presently only
available in Norwegian)
Email contact for information:
carcinor@kreftforeningen.no
POLAND
Carcinoid Patients Organization in
Poland
http://www.rakowiak.pl/
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SWEDEN
CARCINOID PATIENTS ASSOCIATION (CARPA)
in Sweden.
This site contains many important carcinoid disease related articles
by
Professor Kjell Öberg and research team, in both Swedish and English.
Carpa vidarebefodrar frågor till Sektionen för Endokrinologisk Onkologi i Uppsala. Carpa forwards questions of medical character to the Section of Endocrine Oncology in Uppsala
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NEW in the United Kingdom (May
9, 2006)
NET Patient Foundation incorporating Living With Carcinoid
www.netpatientfoundation.com
AMEND (Association for Multiple Endocrine
Disorders)
Multiple Endocrine Neoplasia
(MEN1 and MEN2) support group whose mission is to help
and support people with this rare condition. Visit their web sites, click on the
blue underlined names above. For more information contact:
Liz Dent at Liz.Dent@amend.org.uk
or
Clare Goldsmith at
claregoldsmith@hotmail.com
===========
Local support groups with a web site and/or communication via email
NORTHERN CALIFORNIA
NEUROENDOCRINE CANCER FIGHTERS (NCNCF)The
group also has an e-list. To join it go to:
NCNCF-subscribe@yahoogroups.com & http://health.groups.yahoo.com/group/NCNCF/
NORTHERN CALIFORNIA
CARCINOID NEUROENDOCRINE SUPPORT GROUP
NorCal CarciNet – (NCCN)
An affiliate of Calif. Carcinoid Fighters - (CALCF)
Web:
www.carcinoid-net.org
SUPPORT~EDUCATION~AWARENESS
(SEA)
for those Living with Carcinoid
visit their website:
http://www.SEA4carcinoid.com
CONNECTICUT CARCINOID INITIATIVE (CCI)
website:
http://www.ctcarcinoid.homestead.com
New
England Carcinoid Connection, Inc. (NECC)
Visit the website:
http://www.carcinoid-newengland.org/
Capital Area Carcinoid Survivors (CACS)
http://members.cox.net/cacsva/index.htm
Florida
Carcinoid Support Group
Web site:
Metro Atlanta Carcinoid Awareness Group (MACAG)
http://groups.yahoo.com/group/MACAG
Chicagoland Carcinoid Fighters
web site at:
http://www.freewebs.com/chicagocarcinoid/
BOSTON
CARCINOID SUPPORT GROUP
http://research.dfci.harvard.edu/neuroendocrine/
Michigan
Carcinoid Support Group
Metro NY Carcinoid Support Group
(MNYCSG)
Web site:
http://www.carcinoid.us/
Carcinoid Cancer
Awareness Network, Inc. (CCAN)
http://www.carcinoidawareness.org
MidAtlantic Carcinoid-NeuroEndocrine Tumor Association (MACNETA)
MACNETA-subscribe@yahoogroups.com
Pennsylvania
Carcinoid Cancer Advocacy Network (PCCAN),
PCCAN-subscribe@yahoogroups.com
Delaware
Valley Carcinoid Connection
http://www.phillycarcinoid.org/Home_Page.html
CARCINOID CANCER TEXAS SUPPORT (CCTS)
http://www.carcinoid-tx.org/home.htm
MidAtlantic
Carcinoid-NeuroEndocrine Tumor Association (MACNETA)
info@macneta.org
There
is an on-line group for Canadians and some interested Americans.
carcinoidnetscanada@yahoogroups.ca
CarciNor (the Carcinoid patients association in Norway)
Carcinoid Patients Organization in Poland
http://www.rakowiak.pl/
CARCINOID
PATIENTS ASSOCIATION (CARPA)
in Sweden.
NET Patient Foundation
incorporating Living With Carcinoid (in the UK)
www.netpatientfoundation.com
Carcinoid-Neuroendocrine Tumour Society-Canada (CNETS)
www.cnetscanada.org
+ + + + + + + + + + + + + + + +
November 2001 Stephen Pazan, President Nik Neville, Publicity Morris Bialick, Treasurer Susan Anderson, Board Member Terry Wright, Secretary |
May 4, 2002 Stephen Pazan, President Morris Bialick, Treasurer Nik Neville, Publicity Terry Wright, Secretary Dr. Eugene Woltering, (Medical Advisor) Susan Anderson, (Arizona representative) |
Oct. 2003 Susan Anderson, Board Member Pat Gerenday, Secretary Stephen Pazan, President Morris Bialick, Treasurer |
Oct. 2003
Dr. Eugene Woltering Medical Advisor |
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 15, 2005)
Carol-Anne Wilson ..... Texas ..... Chair
Jim Weiveris ..... New Jersey ..... Secretary
Linda Silversmith ..... Maryland ..... Treasurer
Cynthia Marrs ..... Oregon ..... Member (on leave of absence)
CALIFORNIA CARCINOID FIGHTERS SEMINAR 2003:
For Carcinoid patients, family, friends and medical
professionals
Saturday October 25, 2003
7:00AM-4:30PM
Doubletree Hotel Santa Ana/Orange County Airport
201 East MacArthur Boulevard, Santa Ana, CA 92707
Mention the "Carcinoid Seminar" for the special room rate and to
request "special needs".
Coordinated by California Carcinoid Fighters (CalCF)
Underwritten through a generous grant from Novartis Oncology
For more information visit the CalCF website
http://www.sccfighters.org
or contactt Tom May of The Wellness Community-South Bay Cities
1-310-376-3550 extension 22
Please read last section on this page - below. Thank you, Susan, 1-26-2009
Since
1996 --- when I first located others with
Carcinoid --- I have answered every email sent to me,
although some replies were
delayed longer than I liked. I am NO longer able to reply to all e-mails due to
the volume and other things going on in my life (all good). I do love hearing
from others, but an unable
to reply to all individually. I shall not forget my
many Carcinoid friends and of course shall reply to you …
as time permits.
This
web site was 14 years old on April 27, 2011, and my plan is to keep it updated
for many years to come.
Since my husband "retired" I am away from my computer for days, and sometimes, weeks at a time. Yes, there is wireless internet and we have tried that a number of places. But, if I deal with email when we are away from home then it is not a "restful vacation" for me.
PLEASE use the SEARCH capability at the top my pages. You may search for a word, a phrase, a drug, a treatment, a book title or anything you can think of. You may search this site only, or search the complete World Wide Web.
To speak with a person please know you may call the “telephone information and support line” of the Carcinoid Cancer Foundation, Inc. (CCF), Tuesday through Thursday 10 a.m. to 4 p.m. Eastern Time at 1-888-722-3132 (free) or 1-914-693-1001. “The information and support line” is staffed by medical professionals. Mondays and Fridays are research days, if you call then and do not reach a person do leave a clear message. The Carcinoid Cancer Foundation’s (CCF) superb web site is at http://www.carcinoid.org
CCF - Serving
the carcinoid/NETs patient and medical community for
more than forty
years (chartered in 1968)
“Meets Extensive Standards of America’s
Most Experienced Charity Evaluator”
Better Business Bureau
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DISCLAIMER:
I am a patient and
NOT a medical doctor or health care professional. I share information and
links to information that has been helpful to me and that I believe to be
correct and good, but I cannot guarantee the accuracy of this information,
except for MY stories. I urge you not to rely only on this information
but I believe you should discuss your situation and information with your
medical doctors and/or other medical professionals.
"Sunny" Susan Anderson
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Copyright © 1997-2011 Susan L. Anderson. All Rights Reserved.
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