Support Groups

BRAINTMR List

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Other BRAIN TRUST Groups

Guidelines for Posting

Other On-line Support Groups

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.

adultbsg	Adults with brain stem glioma
List facilitator	Dona Ross -- Contact this Facilitator

adultependy	For adults with ependymoma
List Captain	Bruce Blount -- Contact this Facilitator

btcaregivers	Caregivers of brain tumor patients
List facilitator	Sandra Norton -- Contact this Facilitator

bthealthykids	For families where one member has a brain tumor and there are healthy active children
List facilitator	Sandra Norton -- Contact this Facilitator

 

Craniopharyngioma
List facilitator	David McCorkle -- Contact this Facilitator

 

DNET	Dysembryoplastic Neuro-Ectodermal Tumors
List facilitator	Toni Levinson -- Contact this Facilitator

 

ependyparents	Parents of Children with ependymoma
List facilitator	Jill Dombrowski -- Contact this Facilitator

 

JPA	Juvenile Pilocytic Astrocytoma
List facilitator	Mary Lynn Bower -- Contact this Facilitator

 

meningioma	For men and women with meningioma
List facilitator	Kim Chrane -- Contact this Facilitator

 

spinetmr	Information and Support about Spinal Tumors
List facilitator	Bruce Blount -- Read more about the group

 

TOPS	Teens Of Parent Survivors
List facilitator	Rita Lewis -- Contact this Facilitator
List 'Parent'	Ilene Lewis

 

Craniokids
List facilitator	Barbara Jacobs -- Contact this Facilitator

 

Lymphoma
List facilitator	Barry Gates -- Contact this Facilitator

 

Oligodendrogliomas
List facilitator	Catherine Ilson-- Contact this Facilitator

 

Young Adults	A group for teens and young adults with brain tumors
List facilitator	Jesse Jimenez and Giselle Tejeda-- Read more about this group

 

PXA	Pleomorphic Pseudoxanthro Astrocytoma
List facilitator	April Bradick -- Contact this Facilitator

 

Syringomyelia
List facilitator	April Bradick -- Contact this Facilitator

 

Epidermoid
List facilitator	Samantha Jane Scolamiero -- Contact this Facilitator

 

Adultependy - For adults with ependymoma
List Captain: Bruce Blount

Previous Captain: Ilene Lewis

The Adult Ependymoma Group is a group of approximately one hundred 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. We have initiated a periodic "topic question" that is presented to the List. These questions often lead to additional discussions.

Approximate Group Size: 100 subscribers
Average Number of Messages per day: 10

 

Meningioma - For men and women with meningioma
List Captain: Kim Chrane

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 - Parents of Children with ependymoma
List Captain: Jill Dombrowski

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