ITS JUST BENIGN INC via Crowdrise
January 26, 2011
BENEFITING: ITS JUST BENIGN INC
"So you're OK. It was benign." Not true! I was diagnosed with a brainstem glioma in 1986, at age 11. I had two operations & radiation. My side effects are bad balance, a deaf ear, chronic pain, and weakness to my left side. It's been very difficult growing up this way. Since I was so young, my education & career have suffered and it's been extremely isolating. I’ve only connected with other survivors recently, thanks to my nonprofit.
Decades have passed since my treatment, but the isolation survivors feel is immeasurable. They deal with so many problems and life is so uncertain for them. Understandably, brain cancer is always publicized. However, quality of life issues for the benign brain tumor diagnosis is never really discussed. Just like diabetes or parkinson’s disease, this diagnosis deserves compassion and understanding.
My nonprofit, It's Just Benign, www.itsjustbenign.org, has been doing wonderful things. It's also a social networking site & survivors connect from all over the world. Members are from S. Africa, the United Kingdom, and the US. Members write blogs, forums, etc. and can express themselves. This helps everyone heal. I also have a well-respected brain surgeon helping me with the medical aspects.
I have many exciting plans as an advocate. I’m already running the website, facilitating a support group, and sending out a letter writing campaign. I don’t have any more free time with my daily job and I also have my own health issues. I’d really like to be able to spend my time as a f/t advocate and I know that my membership will be thrilled if benign brain tumors would be discussed as a serious diagnosis. How I can help:
Education-I would like to public speak at schools, in Sociology classes at Universities, for medical students, physicians, etc.
Benign Brain Tumor Display- I made a display about the serious consequences of benign brain tumors & it’s presently at the local YMCA. I want to circulate it at schools, libraries, hospitals, etc.
Information & Referral-survivors write to me from all over the world. I usually don't have time to help them because it involves time & research.
Support Groups- I facilitate a local group. I could also help survivors in other locations connect and run a group.
Ask Specialists-Members can ask specialists questions for free. Currently, a neurosurgeon & a nutritionist answer questions. I want to have different specialists such as a disability attorney, ophthalmologist, etc. to help the membership, but I can't do all of the research anymore with my limited time.
I have more ways to help but I'm not sharing everything. Please check out the site. I make $250/week and would like to raise 25 weeks worth. But I’d appreciate any help. Thank U