Our History Return to About Us

During the summer of 2001, a small group of us considered forming a support group for the metro New York area. We had a brief steering committee meeting in August. Then everything came to a grinding halt on September 11th. A group of us met again in mid-October and started to set specific plans in motion for the Metro New York Carcinoid Support Group.

We are a tri-state support group covering Manhattan, Long Island, New Jersey & Connecticut. Due to the large geographical area, we are currently broken down into four chapters. Eventually, as our group grows, we recognize that there may be a need to break these chapters down into sub-chapters or create additional chapters (such as upper New York state).

Our mission is twofold. We will strive to educate patients, caregivers and the general public as to the proper diagnosis of, and treatment modalities for, carcinoid and other neuroendocrine cancers. The need for this has been especially brought to light with the passing of Wendy's founder, Dave Thomas. It is unfortunate that most news articles failed to mention carcinoid at all. Of the few that did, most gave it a one line description and did not accurately portray it as the cause of Mr. Thomas' death. They attributed his death to liver cancer, which as we all know, was not his primary cancer. We see the lack of education among the general public about carcinoid and hope to serve as a basis for furthering awareness of our disease. Even among the medical profession carcinoid remains relatively unknown and obscure, since most doctors are trained to look for the more common ailments and forget about the uncommon illnesses such as carcinoid and other neuroendocrine tumors.

In addition to broadening the awareness about carcinoid and other neuroendocrine tumors (NET), our group will serve as a support network for all carcinoid/NET patients and their caregivers. We understand the overwhelming fear that comes with the diagnosis of cancer and the even greater fear after being diagnosed with a rare cancer. It can seem very lonely at times and we seek to provide positive emotional and spiritual support to members who desire it.

The meeting structure of the group will consist of gathering twice a year (April and October) for seminars presented by The Carcinoid Cancer Foundation which include guest speakers on specific topics. The interim months will see meetings set up within the various chapters. The intervals, dates and structure of these chapter meetings will basically be set by the needs of each chapter's members.

New Jersey's first meeting was held in November 2001, with 6 survivors and 5 caregivers. This meeting was a get acquainted time and seemed to be beneficial to all in attendance. We started a local phone support list (members willing to be contacted by others with questions about diagnosis, treatment, etc.) and also created a newsletter which now serves the Metro group as well as any other carcinoid/NET patients interested in receiving it. We will be having at least one meeting in the interim months and hope to have local speakers in attendance as much as possible. Manhattan, Long Island and Connecticut chapters will also be holding local meetings.

Our latest project in 2002 was the creation of a Nationwide Phone Support List. In cooperation with the Carcinoid Cancer Foundation, we have created a list of people from across the country and Canada who are willing to communicate with others in need of answers, reassurance, and general support (in much the same manner as the local phone support list). This program is called "Friend to Friend" and is dedicated to the memory of Rosemary Finley. Rosemary was the founder of the Minnesota Carcinoid Support Group and also helped fellow noids around the country through her phone conversations and emails. Please see our link to "Friend to Friend" for more information on this program.

The Metro New York Carcinoid Support Group has an informational package that we will be happy to send to anyone interested. To receive the package, our newsletter, any other information regarding carcinoid or other neuroendocrine tumors or our support group please contact:

Jim Weiveris, Tri-State Coordinator

We look forward to assisting you in any way we can.