Support Groups and Information
The Adult Ependymoma Online Support Group is a private email list consisting of 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!
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.” There are excellent videos on this site:
The Musella Foundation maintains a list of clinical trials and noteworthy brain tumor treatments: http://www.virtualtrials.com/
My fellow survivor and good friend Bruce Blount has a neat website: http://sites.google.com/site/adultependymoma/
Here is a useful review of the brain's anatomy and the fourth ventricle in particular:
About my Montgomery Trach button that I really liked from 2009-2014 before I had to switch to a trach that could attach to a ventilator:
About my way-more-comfortable-and-breathable-than-Shiley Bivona TTS Trach tube:
My neurosurgeon for my first two surgeries, Dr. Laligam N. Sekhar, is at the University of Washington:
Dr. Howard Fine was the head of the neuro-oncology branch at the National Institutes of Health for many years. He is now at Weill Cornell Brain and Spine Center.
Dr. Mark Gilbert at NIH is outstanding and his staff are terrific. I'd encourage anyone with a brain tumor, but especially someone with an ependymoma, to contact him. He is the ependymoma expert.
Dr. Jason Sheehan at UVA was my gamma knife surgeon in 2013.
Dr. Benjamin Purow is my amazing doctor at UVA. I can't say enough terrific things about UVA and the brain tumor department especially.
There are very few proton beam radiation centers. I was fortunate to go to Hampton University Proton Therapy Institute in the Tidewater area of Virginia. My doctor at HUPTI is Allan Thornton.