CARCINOID CANCER
A rare form of "slow-growing" neuroendocrine cancer
Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness
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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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+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + CARCINOID /
NEUROENDOCRINE TUMOR AWARENESS + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + NEW - Carcinoid Cancer Foundation, Inc. (CCF) - NEW CCF 11th
Annual Carcinoid/NET's Conference
NEW - Carcinoid Conference in Harrisburg, PA! -
NEW Featured speakers: Details, including the agenda, can be viewed at the PCCAN.net website (see Conference) or using the following link http://www.pccan.net/index_files/Page700.htm. Please register early-- on-line registration is available. Teresa Lanza + + + + + + + +
Dr. Woltering's lecture on
the Carcinoid Cancer Foundation's Or
The most recent lecture
Dr. W has given was of the Video recordings
Bon Appetit - A Collection of Recipes by Connecticut
Carcinoid Initiative
The
non-profit organization:
http://www.floridaz
The Second
annual benefit event
* * * * * * * * * * * * ASCO Exhibit in Chicago, June 2007 American Society of Clinical Oncologists (ASCO) Slide show Picture page * * * * * * * * * * * *
The first batch of webcasts
( Day one --Main sessions) from the Portland, OR Conference are now
available on the CCF website: You will find them under Noteworthy and
Lecture Transcripts and Webcasts from the main page
http://www.carcinoid.org Note that at present they
can only be viewed with Internet Explorer.
Enjoy....you will have five hours of
viewing for starters.
CCF - Serving the carcinoid/NETs patient and medical community
for over 35 years (chartered in 1968)
* * * * * * * * * * * * There was a one day
Carcinoid / Net Conference to be held on * * * * * * * * * * * * Dear Friends,
Some of our past supporters have told us they thought that CCF and
CFCF were both either same or closely collaborating organizations.
Please see letter below which I sent to such a former contributor in
response to her answer to my question why she switched her
contribution to CFCF instead of CCF. Please let’s discuss this issue
at the board meeting tomorrow. Dear Amy, Thank you very much for your e-mail and explaining your reason for supporting the Caring for Carcinoid Foundation. I appreciate your openness and your kind words. Congratulations on the birth of your son! I wish you a lifetime of happiness with the newest addition to your family. In response to your question, I would like to explain that funding that goes to the Caring for Carcinoid Foundation and funding for the Carcinoid Cancer Foundation is not actually earmarked for the same purposes. Nor do the two foundations work together. The Caring for Carcinoid Foundation, formed only three years ago, chose a name that closely resembles that of the Carcinoid Cancer Foundation, established nearly forty years ago. Even our acronyms are extremely similar, CFCF (Caring for Carcinoid Foundation) and CCF (Carcinoid Cancer Foundation). While both foundations are devoted to carcinoid patients and their families, our goals are very different and the means of achieving these goals differ as well. The money contributed to the Caring for Carcinoid Foundation goes for funding one narrow area, that of genetically oriented research to find a cure for small intestinal carcinoid tumors in the next ten years, a figure that has already been revised by the Caring for Carcinoid Foundation. This is a good and commendable goal but one that is not considered realistically obtainable within the next decade or two in the opinion of many carcinoid specialists and of those doing this research. We at the Carcinoid Cancer Foundation believe that it is crucial to focus on better awareness of the disease and other related neuroendocrine tumors, earlier diagnosis, better diagnostic tools, and better use of treatments currently available. We are also committed to education and research on ALL of the locations of carcinoid, including lung, stomach, thymus gland, pancreas, colon, rectum, and ovaries (each of these have unique characteristics), with the ultimate goal of finding a cure. Attention must also be directed to the carcinoid syndrome itself and to other related neuroendocrine tumors and their syndromes, such as Gastrinoma, VIPoma, Insulinoma, Glucagonoma, etc. Further, we believe there is the need for better use of existing treatments, as well as the development of new treatments, to improve the quality of life for carcinoid sufferers, and most important, to prolong their survival. In our opinion, the areas listed above receive only token attention by the Caring for Carcinoid Foundation, whereas the Carcinoid Cancer Foundation strongly supports all these goals, as well as research on new diagnostic methods and all varieties of research directed towards a cure. While the Carcinoid Cancer Foundation, which has existed for close to forty years, often has worked on the aforementioned goals on a shoestring budget, we are very proud of the goals we have accomplished and the research we have funded. We are not driven by a race against time to aggressive fundraising, though we certainly need and are very grateful for contributions to continue our research, carcinoid/NET awareness campaign, and support activities. That the affairs of the Carcinoid Cancer Foundation are judged to be conducted in an ethical, honest and open manner is attested to by the Foundation being granted the Better Business Bureau’s seal of approval (http://www.give.org). The Carcinoid Cancer Foundation policy has always been to keep separate all support, educational, and research activities from fundraising solicitations. For example, we do not sponsor a lecture or scientific conference and concurrently at the same venue solicit contributions. We focus on accomplishing results for meaningful application now, not just promises for the future. We are so very appreciative of your support of the Carcinoid Cancer Foundation and your continued commitment to the carcinoid community. Please let us know if we can be of assistance to you at any time in the future. Very Truly Yours,
* * * * * * * * * * * * Photos now available from the first Zebra Ball Click Here The Second annual benefit event The Zebra Ball (tm) - Stars for the Stripes (tm) will be held February 9, 2008 * * * * * * * * * * * * * * * * * * * * * * * *
WEBCASTS of lectures
from the Philadelphia patient + + + + + + + + + +
NET NEWS, Vol
1, Issue 1, Winter-Spring 2006 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. + + + + + + + + + + The Carcinoid Cancer Foundation, Inc.,
has a nice section to their + + + + + + + + + + Carcinoid Cancer Awareness Network, Inc. (CCAN) have put up a very + + + + + + + + + + What’s Tried and True – What’s New? Symposium for patients, caregivers, family, friends, & medical professionals Guest Speaker: James C. Yao, MD, MD Anderson Cancer Center, Houston, TX Sunday, April 2, 2006 1:00 – 5:30 pm Mount Sinai Hospital, New York, NY For more information and to register (click on link):
++++++++++++++++++++
The NECC is excited to be
hosting a Regional Carcinoid/Neuroendocrine
Tumor Conference to be held in
the
Boston area on
June 16th 2006.
We are fortunate to have as our keynote speakers
world renowned researcher,
Judah Folkman MD
and
Matthew Kulke MD.
For more information about
New England Carcinoid Connection
and its upcoming
conference, please
visit our website:
www.carcinoid-newengland.org.
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NEW - posted Feb. 13, 2006
We are pleased to announce
that the
Association of Cancer
Online Resources (ACOR) has agreed to
host a Listserv called
Carcinoid-Dr. Members of the
Listserv communicate with each
other by sending
e-mails to the Listserv,
which then distributes
the messages to all other
members. This Listserv was activated
in February 2006.
Membership in this Listserv is limited to healthcare professionals.
Carcinoid patients and
their caregivers are
welcome to tell the
members of their medical
team about this
resource.
Any healthcare professional who wishes to subscribe
should send an e-mail to
carcinoid-dr-request@listserv.acor.org
and describe their professional credentials and their
reasons for
joining, and provide their office address and phone
number.
Feel free to share this information with other Carcinoid
and neuroendocrine patients
and their caregivers, as well
as any
healthcare professionals who you believe may be
interested in participating in
Carcinoid-Dr.
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NEW -
The Carcinoid Poem Click HERE
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Dec. 2005 .... Below is the letter Gradon has composed to assist him in his
Dear Friends, I am asking you to donate money toward the purchase of one of the very first books on diagnosing carcinoid cancer. A lot of doctors do not know enough about carcinoid cancer symptoms and what to look for to diagnose it. So, if a person comes to see them and they have read the carcinoid book, they can help that person correctly and help protect them instead of hurting them more. If you send me the money I will make sure the books we purchase gets into the hands of doctors who do not know enough about carcinoid cancer. My dad has carcinoid cancer and was diagnosed with it in April of 2004. He had severe pain. The doctors thought it was from a kidney stone but when they went in to get it, there was a tumor not a stone. He went to a lot of different doctors and one finally knew what he had. He told us he has carcinoid cancer and it is the slowest growing cancer. Also, he was told not to worry about it yet because it would be a long time before he had to do anything. My mom went online to find out more about it. She found out that it was not true! He had to do something right away. He had to see a specialist in his cancer. She found out that one of the best doctors who deals with his cancer was in New York. We saved up all summer to go there that fall. We had a lot of help from our family, friends and neighbors. Some friends donated money and some donated airline miles. All of our neighbors held a huge garage sale and made money for us. Last fall we went to New York to see the specialist, Dr. Warner. He told us all about carcinoid cancer and what to do about it. My dad is still working on getting his cancer better. My dad was very lucky to find out about his cancer and lucky to have my mom find out the RIGHT information about carcinoid cancer. The books cost $15 a piece. Please help me purchase the book made for diagnosing carcinoid cancer and getting people with this illness the help they deserve. Together I hope we can help save people time, money and especially their lives by giving more doctors information. Thank you very much, Gradon Faulkner Please make checks payable to : Healthcare Foundation + + + + + + + + + +
+ + + + + + + + + + Lance Armstrong Foundation's (LAF) Ride for the Roses, Oct. 21 - 23, 2005
I have
joined the 2005 Peloton Project and will ride in the Ride for the Roses
My
mother,
Dawn Decker, is currently battling
carcinoid cancer
and several
I plan to
complete the 75 mile ride in the 2005 Ride for the Roses held in Austin,
TX,
When you
sponsor me in this ride, you will be showing your concern and support
for
I want to thank you for helping support me in this ride not only for
myself, but for my Respectfully,
Justin Decker
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CCAN SECOND ANNUAL DINNER DANCE
Friday Nov. 11, 2005 from 7 PM -11 PM. at the Bellmore Knights of Columbus. The cost will be $80 per person. This includes a Buffet dinner and a full open Bar. There will be a DJ for your listening pleasure as well as for dancing. The evening will be filled with raffles including 50/50 and many great prizes. We will also have a sports and entertainment memorabilia silent auction. All Profits will be used for awareness projects and research both at the local and national level. Anyone attending the dinner dance is invited to be our guest for a medical seminar open to anyone wanting to know more about Carcinoid Cancer .A sit down lunch will be served. Our special guest speaker a renowned Carcinoid specialist Eugene Woltering, MD November 12, 2005 10:30 AM -3:00 PM Marriott Hotel, Uniondale, NY 11553 To attend just the medical seminar the cost will be $15 per person. Space is limited So please RSVP by NOV 2 Please make all Checks payable to CCAN INC and mail to 2480 Hull Ave N. Bellmore NY 11710 Anyone interested in nearby hotel information and rates please contact me. Maryann Wahmann VP Carcinoid Cancer Awareness Network INC. (CCAN) Chair of the LI NY Carcinoid Cancer Support Group Carcinoidaware@aol.com + + + + + + + + + +
I wanted to share the status on the fundraiser CCAN had started
to help Dr
Woltering and Dr Anthony with their research Lab. First I like to thank all of you that have sent in the donations. CCAN has donated 5,000 to start the fundraiser off . CCI (Connecticut group) donated $1,000. To date we have received $1,150 private donations. Bring the total to $7,150. I will be mailing a check over the weekend to Dr Woltering. If you would like to make a donation. Please mail a check made out to CCAN mail to 2480 Hull Ave N. Bellmore NY 11710. Please write LSU fund in memo area Maryann 516 781 7814 (Above posted 13 October 2005)
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SEA (Support,
Education & Awareness for Carcinoid First posted June 18, 2005.
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Carcinoid Cancer AwarenessSaturday, August 13th, 2005 8:00 a.m. at Fort Collins, CO City Park HELP US
RAISE MONEY TOWARD CANCER AWARENESS AND RESEARCH
Activities: 5K and 1 Mile fun run/walk; Live
music by the "Altered Ego's"; Children's Jump Castle; Free Food and Drinks;
Roadside Entertainment; Prizes for age bracket winners of all ages.
Award ceremony after the race!!
Educational Exhibits.
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