Adult Ependymoma: A Patient's Story
resources
Clockwise from top:  Dr. John Jane Sr, Dr. Nazaneen Grant, Dr. Laligam Sekhar, Dr. Howard Fine



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!

http://braintrust.org/groups/adultependy/


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:

https://cern-foundation.org/


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:

http://biology.about.com/library/organs/brain/blfourthvent.htm


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:

http://www.bosmed.com/


About my way-more-comfortable-and-breathable-than-Shiley Bivona TTS Trach tube:

https://www.smiths-medical.com



My Care


My neurosurgeon for my first two surgeries, Dr. Laligam N. Sekhar, is at the University of Washington:

http://www.uwmedicine.org/bios/laligam-sekhar


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.

http://weillcornellbrainandspine.org/faculty/howard-fine-md


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.

https://ccr.cancer.gov/Neuro-Oncology-Branch


Dr. Jason Sheehan at UVA was my gamma knife surgeon in 2013.

https://med.virginia.edu/neurosurgery/services/gamma-knife/


Dr. Benjamin Purow is my amazing doctor at UVA. I can't say enough terrific things about UVA and the brain tumor department especially.

https://neurosciences.uvahealth.com/services/brain-tumors


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.

http://www.hamptonproton.org/


[2016]

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