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 a group of approximately thirty-five adults, including patients (a.k.a."survivors"), caregivers and relatives. The size of this group is consistent with the rarity of ependymomas in adults. The advantage to the small 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. 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 process whereby we send short "status reports" to the List. These updates often lead to additional discussions on a variety of topics.

Approximate Group Size: 35 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: 250+ 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