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Adult Ependymoma: a Patient's Story
Resources

Support Groups and Organizations

The Adult Ependymoma Online Support Group is a private email list consisting of over 100 patients and caregivers. The group 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. I have met life-long friends in this group.  I recommend joining it!   http://www.braintrust.org/adultependymoma.htm 

The Healing Exchange Brain Trust, based in Cambridge, MA, hosts the largest brain tumor listserv:  http://www.braintrust.org/

Childhood ependymoma is a terrible disease - I know of one support group for parents of kids with ependymomas that a friend says has been helpful to him.  The contact person is:  ependyparents-captain@braintrust.org

CERN stands for Collaborative Ependymoma Research Network.  This group's mission is "to develop new treatments for ependymoma thereby improving the outcomes and care of patients and ultimately leading to a cure."  Check CERN out at http://www.cern-foundation.org/

Check out the very interesting videos from CERN about ependymoma, including one mention that of 60,000 primary brain tumors diagnosed in the US in a year, only 300 are ependymomas!  Here's the link to CERN's page of videos:  http://www.cern-foundation.org/Content.aspx?id=862 or go to each of them at:
 
 
 

 

Information

Emedicine has several articles about both brain and spinal cord ependymoma which are worth wading through:  http://www.emedicine.com/radio/topic259.htm

Here is a useful review of the brain's anatomy and the fourth ventricle in particular:  http://biology.about.com/library/organs/brain/blfourthvent.htm

The American Brain Tumor Association publishes a comprehensive, helpful guide, A Primer on Brain Tumors:  http://www.abta.org/buildingknowledge5.htm

The Musella Foundation maintains a list of clinical trials and noteworthy brain tumor treatments:  http://www.virtualtrials.com/

The National Brain Tumor Society has a thorough FAQ that everyone should review:  http://www.braintumor.org/TreatmentFAQ/

To read about Temodar (temozolomide) go to Schering's site:  www.temodar.com

Here's the Boston Medical brochure about my new stoma button: http://www.bosmed.com/fileadmin/user_upload/pdf_BMPI/IFU_11.2008/n-mccc-e.pdf

My good friend Bruce Blount has a neat website.  Check it out at:  http://sites.google.com/site/adultependymoma/

 

My Care

My neurosurgeon for my first two surgeries, Dr. Laligam N. Sekhar, has a detailed website:  http://depts.washington.edu/neurosur/faculty/sekhar.html

My neurologist, Dr. Ruben Cintron (Reston VA), is terrific.  I wish all doctors could be like him:    http://www.nscplc.com/biocintron.html

Dr. Howard Fine is head of neuro-oncology at the National Cancer Institute.  Dr. Fine, his nurses, and the entire staff at NIH are wonderful.  I encourage patients to find out if they can be enrolled in a study at NIH as I am:  http://ccr.cancer.gov/staff/staff.asp?profileid=5635

Dr. John Jane, Sr., chair of the neurosurgery department at the University of Virginia, placed my shunt and performed my third and riskiest surgery - UVa is an amazing place:  http://www.healthsystem.virginia.edu/internet/people/dop/dopDetail.cfm?drid=233