Other Support Groups at Braintrust.org

The following is a list of support and information groups run by The Healing Exchange BRAIN TRUST. These are special interest online community email groups. They operate a bit differently than the "big" BRAINTMR list. To Join
one of these groups send a message to the list captain specified below. More detailed information about each group including a description of the group, its membership and message volume may be found below the brief listings as it is available.

Adultependy@braintrust.org - For adults with ependymoma
List Captain: Ilene lewis mailto:adultependy-captain@braintrust.org

The Adult Ependymoma Group is currently a group of approximately
fifteen adults, including patients, caregivers and relatives. The size
of this group is consistant with the rarity of ependymomas in adults.
The "advantage" to the size of this group is the incredibly close
and powerful bond the members have formed. Currently the
group serves as an emotional and medical support system for one
another. The members have expressed numerous times how
invaluable this connection is to their survival in the world of
brain tumors. It is difficult to give an average number
of messages exchanged on a daily basis. We have initiated a
"monthly update", whereby we send short "status reports" to the
List. Many times, different discussions offshoot from these updates.

Approximate Group Size: 15 subscribers
Average Number of Messages per day: varies

Meningioma@braintrust.org - For men and women with meningioma
List Captain: Nancy Conn-Levin mailto:nconnlevin@braintrust.org

Description: Members live in many countries including USA, Canada,
Bermuda, England and Australia. Most are meningioma survivors, but
some family members and friends also subscribe. The messages
tend to be on topic, and the general tone is supportive, respectful
and informative. List facilitator Nancy Conn-Levin, M. A. is a health
educator who specializes in stress management and brain tumor
resources. She is also a meningioma survivor.

Approximate Group Size: 200+ subscribers
Average Number of Messages per day: 2-10 messages per day

Ependyparents@braintrust.org - Parents of Children with ependymoma
List Captain: Jill Dombrowski mailto:ependyparents-captain@braintrust.org

Description: We are a group of parents looking for knowledge
and information on behalf of our children who are too young to
make decisions.

Approximate Group Size: about 30
Average Message Frequency: about 5 per week

SPINETMR@braintrust.org - Information and Support about Spinal Tumors
List Captain: Samantha Scolamiero mailto:spinetmr-captain@braintrust.org

Description: This group is still quite new and will become more active
after it is advertised more extensively. Many people that I had met
at conferences felt a bit left out that there was no support group
dealing specifically with spinal tumors, so we are addressing those here.
Patients, families, and professionals interested in spinal tumors are
welcome and encouraged to join in a community effort to discuss
the impact of these tumors, treatment of them, secondary
conditions, and social aspects of coping with these challenging
central nervous system tumors.

Approximate Group size: quite small
Average Number of Messages per day: few
SPINETMR information updated: 2/29/00