The Adult Ependymoma Online Support Group is a private email list consisting of over 100 patients and caregivers. The group is hosted by T.H.E. BRAIN TRUST. The size of this group is consistent with the rarity of ependymomas in adults. Our tight-knit, online community is a strong emotional and medical support system. Members have expressed numerous times how invaluable this connection is to their survival in the complicated world of brain tumors. If you or someone special to you has or has had an ependymoma, please join our group!
Group communication is by a private email list hosted by T.H.E. BRAIN TRUST, a 501(c)(3) nonprofit organization specializing in internet based and patient oriented brain tumor support groups.
About our Group
Ependymomas arise from ependymal cells which line the ventricles of the brain and the center of the spinal cord. These are relatively rare tumors, accounting for 3-6% of all primary tumors. However, they are the most common brain tumor in children. Most occur in the posterior fossa of the brain and of these, nearly all occur in the fourth ventricle. Interestingly, despite their overall low frequency, ependymomas are the most frequent neuroepithelial tumors of the spinal cord. Our group is designed specifically for the adults in the world who are dealing with brain or spinal cord ependymomas.
United States (Alaska, Kansas, Ohio, Washington, Florida, Michigan, Minnesota, Illinois, Indiana, New Jersey, Massachusetts, Pennsylvania, Kentucky, New York, Wisconsin, Virginia, Maine, and California), Canada, Australia, Holland, India, South Africa, and United Kingdom, among others.
Content and Frequency of Messages
In keeping with the focus of T.H.E. BRAIN TRUST, our group emphasizes the treatment aspect of our unique brain tumor, not the search for a cure to the disease. Our aim is to support survivors before, during and after treatment for an ependymoma. The list averages about 300 messages per month, though this can fluctuate. When a new member comes on board, other group members will send their personalized “Welcome” letters. We have initiated a “topic question”, and send it to the group. Often these questions spark additional discussions.