adult ependymoma: a patient's story
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Resources

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Dr. John Jane Sr RIP









 

Dr. Howard Fine



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Dr. Nazaneen Grant











Dr. Laligam N. Sekhar


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!

External link opens in new tab or windowhttp://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:

External link opens in new tab or windowhttps://cern-foundation.org/


The Musella Foundation maintains a list of clinical trials and noteworthy brain tumor treatments: External link opens in new tab or windowhttp://www.virtualtrials.com/


My fellow survivor and good friend Bruce Blount has a neat website: External link opens in new tab or windowhttp://sites.google.com/site/adultependymoma/


Here is a useful review of the brain's anatomy and the fourth ventricle in particular:

External link opens in new tab or windowhttp://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:

External link opens in new tab or windowhttp://www.bosmed.com/


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

External link opens in new tab or windowhttps://www.smiths-medical.com




My Care


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

External link opens in new tab or windowhttp://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.

External link opens in new tab or windowhttp://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.

External link opens in new tab or windowhttps://ccr.cancer.gov/Neuro-Oncology-Branch


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

External link opens in new tab or windowhttps://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.

External link opens in new tab or windowhttps://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.

External link opens in new tab or windowhttp://www.hamptonproton.org/


[2016]


People from all over the world write to me.

 

Please send me an email: cwarrenwelsh@comcast.net


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