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Officers
Al Musella, DPM
President
Mitchell Siegel
Vice President
Steven Ruttgeizer
Treasurer
Neal Houslanger, DPM
Secretary
Medical Advisory Board
Keith Black MD
Cedars Sinai
Medical Center
Robert A. Fink, MD, FACS
Berkeley, California
Arno Fried, MD
Hackensack University
Medical Center
Henry Friedman, MD
The Brain Tumor
Center At Duke
Roberta Hayes, Ph.D.
New York, NY
Gil Lederman, MD
Radiosurgery New York
Mark Levin, MD
New York, NY
Linda Liau, MD, Ph.D.
UCLA Medical Center
John R. Mangiardi, MD
Optimus Services, LLC
Michael Schulder, MD
North Shore
University Hospital
NY
Virginia Stark-
Vance, M.D.
Dallas,Tx
Fort Worth, Tx
Hideho Okada MD, PhD
University of Pittsburgh
Cancer Institute
Stephen Thompson, MD
Hackensack University
Medical Center
Paul M. Zeltzer MD
Encino, CA
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Interested in Brain Tumors?
Join Our FREE Email List!
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Brain Tumor Online Support Groups |
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Brain Tumor Online Support Groups are a way for you to interact with other families dealing with brain tumors. You can use them to learn about your disease, research treatment options, and handle disabilities, side effects and insurance issues. They work via email. You join a group - then just wait for some emails to come in. Respond to one (make sure that the name of the group is in the TO field), and introduce yourself to the group.
We run about 10 groups - each dedicated to a different topic. Here is the list:
- Braintumor Treatments Group: Our main brain tumor online support group - talk is limited to medical discussions about brain tumor treatments (as well as diagnoses, testings, symptoms, etc). Discussion about all types of brain tumors is allowed: malignant, benign, primary and metastatic. No talk of politics, jokes, religion allowed. For those, use the other groups listed below!
- Brain-Novocure Group NEW! For people interested in the Novo TTF device (Tumor Treating Fields).
- Acoustic Neuroma Group NEW!
- Braintumor Community Group: For NON Medical discussion - for patients / caregivers / doctors interested in brain tumors! THIS IS AN ADULTS ONLY GROUP. Some humor and discussions will be offensive! Use this group for the types of messages that are off-topic on the other groups! Humor and politics are welcome here! Run by the Musella Foundation.
- Spinal GBM group: For people interested in a spinal GBMs.
- Brain - Gleevec group: For people interested in the experimental drug Gleevec for brain tumors. Run by the Musella Foundation
- Bt-Faith Group: For discussions involving faith / religion / God among people interested in brain tumors.
- Optic Glioma Group
- Brainstem Glioma Group: Adult and children with brainstem tumors.
- Choroid Plexus Papilloma Information and Support Share Group
There are also online brain tumor support groups run by other organizations and individuals. There is a list of the most important ones at http://www.virtualtrials.com/lists.cfm, and for others, do a google search!
Tips on using an online support group
- The person who makes the medical decisions - either the patient or your husband / wife / parent / child / friend should join at least 1 and preferably a few brain tumor online support groups. Decide if the patient wants to be exposed to possibly bad news repeatedly. Our braintumor community is more upbeat - but not for medical informationm. (Watch out for adult topics there).
- Read messages for a few days to get the feel of the group before jumoing in (unless you have a pressing problem or need to make a decision soon - then jump right in!)
- These groups work by email. When any member sends an email to the group email address, a copy is sent to each of the members in the group. IF you reply to that group email address, it will go to everyone in the group.
- Do not post anything that you would feel uncomfortable if your family, friends or boss saw it. Our groups are usually not indexed by google, but anyone can join and search the archives. The archives are forever. Sometimes people steal messages from online support groups and post it on thier blogs (which ARE indexed by google) to draw search engine traffic. We request that they take them down when we find them, but they are in google forever.
- Do not post personal information. You can use your first name and initial of last name if you don't want your name in the group. NEVER post your phone number or address. NEVER tell the world when your house is going to be empty.
- Most of the people in any online support group are individuals just like you. Take thier opinion as ideas to pursue with your doctors - buyt do NOT take it as medical advice. They could be wrong, and what works for one person might not work for others. Even if the doctors in the group say something - they did not examine you and your scans - they just talk in generalities. and do not give medical advice They give ideas.
- Be aware of WHO is running the group. There are some groups run by individuals who have a hidden agenda. To protect against that, join a few groups to get a range of ideas. IF you find something in one group, bring it up in another to get a reality check. In general, if the group is run by a nonprofit brain tumor foundation, you can have more faith that it isn't trying to push a snake oil treatment - but there are always individuals who come in and try to push something.
- Be wary of anything presented that sounds too good. Even well meaning people can be misled by individual case histories taken out of context. In other words, if you come upon a group that has a few long term survivors who did well on a specific treatment, the first question to ask is what % of the people in the group did that well on that treatment. IF a treatment works as well as standard treatments, you would expect about 5 out of 100 Glioblastoma multiforme patients to be 5 year survivors. (Hopefully that will be much better with treatments being used now - but this is for people who started 5 years ago). IF 1000 people try the treatment, and 10 are long term survivors and they are in the support group - you may think - wow - it looks pretty good. But you would be wrong. You don't see the ones who died. This means the treatment is 1/5 as effective as the standard treatments - because you would expext 50 long term survivors with the standard treatment. To track these things, we have the brain tumor virtual trial. Everyone should join - it is a registry of brain tumor patients, the treatments they do and the outcome. You can see ongoing results if you join!
- Some of these groups generate a lot of email. You might want to create a new free email address - gmail.com is the best - to use for your brain tumor life, to keep your personal and work email seperate. OR - if you use a program like Eudora, Outlook or Thunderbird, you can create filters that seperate email from each online support group into seperate folders so those emails get filtered out of your regular inbox.
- If you get overloaded with email, you can requet that the system send you 1 daily digest instead of individual emails everytime someone sends a message.
- In our groups, there is no tolerance for insulting anyone else or fighting. We moderate (the message is not sent to the group until we approve it) the first few posts from each new member to make sure they understand the rules, and then if they start a fight, we immediately moderate them to nip problems in the bud!
- Stay on topic. We talk about really serious stuff and people don't have the time for off topic stuff. We had one main brain tumor group (which is now called braintumor-treatments), but we had too much off topic stuff, so we split off a few topics into their own groups, such as brain-community, where jokes, politics, sports or anything non medical can be discussed. We have BT-faith for religous discussions as they apply to brain tumor families. For now, braintumor treatments is ONLY for medical discussions relating to brain tumors.
- You should also join a real world support group! Click HERE for a listing of btain tumor support groups!
Here are the most recent topics of conversation in our brain tumor online support groups. To join the discussions, click HERE! The name of the group is in [brackets].
- RE: [BrainTumor-Treatments] Team Madi - Relay for Life
- [BrainTumor-Treatments] Re: Stable MRI today
- [BrainTumor-Treatments] Brain Tumor News Blast!
- Brain Tumor News Blast!
- Re: [optic-glioma] NF and vitamin D deficency
- Re: [optic-glioma] NF and vitamin D deficency
- [optic-glioma] Re: NF and vitamin D deficency
- Re: [BrainTumor-Treatments] Something to celebrate
- Re: [optic-glioma] NF and vitamin D deficency
- Re: [optic-glioma] NF and vitamin D deficency
- Re: [optic-glioma] NF and vitamin D deficency
- [optic-glioma] NF and vitamin D deficency
- Re: [BrainTumor-Treatments] perillyl alchohol
- Re: [BrainTumor-Treatments] perillyl alchohol
- [BrainTumor-Treatments] perillyl alchohol
- [optic-glioma] Re: Ellie in the news and MRI results!
- Re: [BrainTumor-Treatments] Stable MRI today
- RE: [BrainTumor-Treatments] Re: Up for MRI MRS tomorrow - good vibes please!
- [BrainTumor-Treatments] Re: Something to celebrate
- R: R: [BrainTumor-Treatments] Stable MRI today
- R: [BrainTumor-Treatments] Re: Up for MRI MRS tomorrow - good vibes please!
- Re: [optic-glioma] Ellie in the news and MRI results!
- Re: [BrainTumor-Treatments] Re: Up for MRI MRS tomorrow - good vibes please!
- Re: R: [BrainTumor-Treatments] Stable MRI today
- Re: [BrainTumor-Treatments] Something to celebrate
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