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The Life Raft Group - Ensuring that no one has to face GIST alone The Life Raft Group - Ensuring that no one has to face GIST alone
My name is Barbara. I am the mother of three children and the Nonna to six grandchildren.
My name is Barbara. I am the mother of three children and the Nonna to six grandchildren.
The Life Raft Group - Ensuring that no one has to face GIST alone
About GIST
Frequent Topics
Accessing Treatment
Coping with Cancer

Life Raft Group
Membership Application Form

Dear Life Raft Group Applicant,

Who are we and what do we do? We are a group of GIST patients (plus their caregivers & families) who have come together to share our medical experiences and to provide each other with support. This includes many GIST patients taking Gleevec who share information about the efficacy and side effects of this drug and who explore alternative treatment options for those not responding.

Members are encouraged to correspond privately to each other or to the wider group as appropriate to the specific issue. Group correspondence is via a private, secure group list serv format, maintained on a secure server by the Association of On Line Cancer Resources (ACOR). A list-server is like an automated email group. When you send a message to the list server, or reply to one from the list server, it goes to everyone in the Life Raft Group automatically. Should you be accepted for membership in the Life Raft Group you would also be given access to this list serv group.

Privacy: Privacy is of paramount concern. We have all pledged to respect the privacy of members of our group, and agreed not to send information that might be considered private to anyone outside of the group. We try to err on the side of privacy. To help ensure that goal, we restrict membership in our group to GIST patients, and their significant others, and we ask for information that will help us to establish who you are.

Patient Data: We collect basic patient medical data and information relevant to drug response rates and side effects. Any data or information that we share is first totally cleansed of any identifying information in order to protect patient confidentiality. The main format for sharing such information is our Newsletter. Our intention is to give patients/caregivers the information they may need to have an informed and mutually respectful interaction with their physicians and to give both patients and their doctors the information they may need to better manage their medical care. Should you be accepted for membership in the Life Raft Group, you would be expected to contribute medical updates.

Newsletters: We publish a monthly Newsletter to disseminate information both to the general public and to the medical community. Copies are available at www.liferaftgroup.org

Disclaimer: We are patients and caregivers, not Doctors. Any information shared among the group should be used with caution, and is not a substitute for careful discussion with your Doctor.

Please let me know if you have any questions, or if there is anything I can do to help. I look forward to hearing from you and will let you know as soon as possible if you are accepted for membership. Should you be accepted you might wish to make a voluntary contribution to our efforts. This contribution is strictly voluntary and you will never be pressured to make it nor denied membership should you be unable or unwilling to do so for any reason. Contributions should be made payable to The Life Raft Group and mailed to Norman Scherzer, Life Raft Group Executive Director, 40 Galesi Drive, Wayne, NJ 07470. The Life Raft Group is a 501-C-3 non profit organization and contributions are tax deductible.

(s) Norman J. Scherzer
Executive Director



All information provided will be kept strictly confidential and is for the internal use of the Life Raft Group Only. We are committed to protecting the privacy of our members. Any data or information that we share in any way is always cleansed of any identifying information in order to protect confidentiality. Post any remarks in the Remarks Section below.

If you have any problems filling out this application, please call Trish McAleer at (973) 837-9092

APPLICANT INFO
*Denotes required field
Last Name First Middle Init
Patient's Name (If Different) The Patient Is My
How did you find out about the Life Raft Group?
How would you like to receive listserv emails?
PATIENT INFO
Please complete the information below for the patient

Note: All GIST Diagnoses Must Be Confirmed By A C-Kit Positive Test.
Clinical Trial Participants are assumed to be C-Kit positive.
TREATMENT
Gleevec (Also called Glivec outside of U.S.)

Start Date Initial Dosage (mg./day) Current Dosage (mg./day)

Other Medications
Please list any other drugs, in addition to, or as an alternative to Gleevec, which you are taking to treat GIST.

Name Dosage (mg.) Start Date
Name Dosage (mg.) Start Date
Name Dosage (mg.) Start Date

Remarks
Please describe any other treatment including surgery


DOCTOR & CLINICAL INFORMATION
Information About Your Doctor

Your Doctor Facility
Address
City State Country
Dr.'s E-Mail Phone #

Would you like for us to send information about GIST to your doctor?

Clinical Trial Details (If Applicable)
If you are part of a clinical trial, include the trial site, trial doctor, city, state, and country

Trial Site Trial Doctor
City State Country
Dr.'s E-Mail Phone #

C-Kit Test
If you are not part of a clinical trial, you will also need to complete the 2 boxes below regarding the date and results of uour c-kit test. You can obtain this either by asking your doctor or by reviewing the pathology report that was used to confirm your diagnosis. (Note: c-kit can also be called CD-117)

Date of c-kit test Results
PERSONAL DETAILS
Date of Birth Marital Status Gender
Birthplace City State Country
MEDICAL HISTORY
Date Initially Diagnosed

Initial Diagnosis
GIST
Other
If Other Please Describe

Primary Tumor Location & Treatments


Please Indicate Dates, Sites and Treatments for Any Recurrances


Other Medical Remarks

CONTACT INFORMATION FOR MEMBER APPLICANT
Please provide us with either a home or work address or both, a telephone number, an e-mail address, and a fax number (if you have a fax).

Home Work
Address

City
State
Zip
Country
Phone
Fax
*Email
(required)
Our experience is that Internet Service Providers often experience breakdowns or block access to list discussion groups, and we would like a second e-mail address to contact you should this occur
Email 2
COMMENTS AND NOTES
Please tell us something about yourself professionally and/or personally.
Include any special skills or interests.


Other General Remarks

SUBMISSION
All information provided will be kept strictly confidential and is for the internal use of the Life Raft Group only. We are committed to protecting the privacy of our members. Any data or information that we share in any way is always cleansed of identifying information in order to protect confidentiality.

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Last Modified - April 16, 2008 4:20pm
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