Getting Connected (ListServes and Bulletin Boards)
Listserves and bulletin boards are interactive ways to use the internet to connect to others. Each has its own advantages and disadvantages. Listserves are a group of people with common interests that join to be able to contact each other usually for support and information.
The down side of lists are 1) they usually are not regulated so medical information is not guaranteed to be accurate, 2) there may be a large volume of mail, 3) there are treatment differences among institutions that can create anxiety, 4) bad news (deaths, recurrences, and complications) can create more angst, and 5) privacy can not be guaranteed. However, many parents find lists a very powerful support in that they can talk with others who are traveling the same path. The support and decreased isolation are tremendous for some individuals. Membership is usually required but is virtually always free.
Tips to decrease mail :
1) consider digest versions that packs multiple posts into one email usually sent once a day
2) check if web-only is an option and review posts at your leisure from the archives.
If you don't have an email address:
contact http://www.virtualtrials.com/mail.cfm and may be able to use this site to obtain an email address. You must sign in and agree to the conditions of usage.
If you do not see a list serve you are interested in- try doing a search on your own. Two of the best starting places are www.acor.org mailing lists and www.yahoogroups.com. Groups are starting all the time and it is difficult to keep up with the new communities.
General Brain Tumor List Serves
Pediatric Brain Tumors
A group of over 200 primarily caretakers of children with pediatric brain tumors of all varieties.
Review 6/06
Cerebellar Mutism and Posterior Fossa Syndrome
The files and book marks are one of the best aspects of this site. There is an annotated bibliography from a medline search on cerebellar mutism, a bibliography on radiation and cognitive effects, and several articles from a speech pathologist.
Review 6/06
Educating Brain Tumor Kids
A group with links and files dealing with school issues- neuropsychological testing, school re-entry, school options, late effects, etc. There is an associated list serve with archives.
Review 6/06
BRAINTMR mailing List
Perhaps the oldest and largest list founded in 1993 by the Brain Trust Healing Exchange. It is a forum to discuss topics related to all types of brain tumors whether labeled "benign" or "malignant." Information and experience is shared among brain tumor patients, their families & supporters, all kinds of concerned medical and allied health professionals, medical educators, and researchers who study brain tumor growth or treatment.
Review 6/06
Specific Brain Tumor Type List
Astrocytoma
This site of approximately 80 people who have an interest in astrocytomas- both adults and kids. Archives are public.
Review 6/06
Choroid Papilloma and Carcinoma
This is a very small group interested in this rare tumor
Review 6/06
Craniopharyngioma
One of the lists by the Brain Trust Healing Exchange that is open to anyone interested in this tumor.
Review 6/06
Dysembryoplastic Neuro-Ectodermal Tumors
A list for those interested in this type of tumor.
Review 6/06
Ependyparents
A small list for parent of ependymoma kids.
Review 6/06
Optic Glioma
There are about 90 people on this site about this tumor. Archives are private.
Review 6/06
Spinal Tumors
This is a relatively small and new list to address the issues related to spinal tumors.
Review 6/06
Brainstem-Glioma
This is a group over 100 persons interested in this tumor. Archives are private.
Review 6/06
Other Lists of Interest to a Brain Tumor Parent
Brain Activist
This is a discussion group regarding legal, regulatory and public policy issues impacting cancer patient rights and benefits in clinical trials for the purpose of educating and empowering the patient community. This group is open to all ages affected by brain tumors.
Review 6/06
Brain Tumor CareGivers List
To join list contact the list owner: Sandra Norton btcaregivers-captain@braintrust.org. A list for caregivers.
Review 6/06
Disability Grape Vine
?The Disability Grapevine' Online Newspaper publishes press releases, news articles and Letters to the Editor related to the Disabilities Community. Persons with disabilities write most of the features.
Review 6/06
Temozolomide (Temodar) Mailing List
Almost 500 people are on this list for patients / caregivers / doctors who use the drug Temozolomide to treat brain tumor Archives are private but there are hundreds of posts.
Review 6/06
Home Schooling Special Needs Children
This group is interested in supporting parents who chose to home school their children with special needs. Most of our members have medically fragile children dealing challenges in speech, motor development and learning disabilities and homeschool full time or part of the time. Topics include: curricula, speech, feeding issues, OT, PT, "other" sibling survival strategies, staying "sane" and a host of other issues.
Review 6/06
Hydrocephalus (HYCEPH_L)
This is the home page of the list which gives instructions on posting and subscribing. This list is open to all people interested in hydrocephalus and frequently goes off-topic.
Review 6/06
Pediatric Cancer
Ped Onc List
This is a list for parents of all pediatric cancer patients. There are about 270 persons on this list.
Review 6/06
Ped Onc Survivors
This is a list for parents who are dealing with off treatment issues.
Review 6/06
Long Term Survivors
This is a list for patients of pediatric cancer that are long term survivors.
Review 6/06
Candlelighter's Bulletin Board
One can get to the message board from the main page- under support. There are listing of topics and the archives go back for several months. One can search by topics as well as by date.
Review 6/06
For Teens
4Youth
This is a list for teens to find other teens with cancer.
Review 6/06
Teenage Brain Tumor Survivors
A very small, new group.
Review 6/06
End of Life Issues
Day by Day
To join the list, the interested person needs to send a request to join to either Gigi at gigi@lgcy.com or Liz at lizedwar@busprod.com.
A list for parents of children who have died or dying from cancer, and for parents whose children's treatment options have been exhausted.
Review 6/06
Ped-Hospice
There are about 30 persons on this small list.
Review 6/06
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