Defining OligoNation

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Oligo:  Short for Oligodendroglioma, a form of brain cancer arising from the glial cells.  There are no known cures or effective treatments.  Average life expectancy is 8-10 years.

Nation:  A body of people, associated with a particular territory, that is sufficiently conscious of its unity to seek or to possess rights or self-governance.

Right now, we are surely Oligo but not yet a Nation.  Many of us feel isolated by this disease, the constant worry, and perhaps the feeling that there is little that can be done.  We are in a real and scary way at the mercy of this disease. We don’t realize that we can unite with hundreds or even thousands of others affected by Oligo to make our voices are heard and insure that research is funded to deliver the effective treatments we so desperately need.

So what is Oligo Nation?  The hope is that it will be a place that unites and mobilizes the Oligo community to take positive actions insure that the medical research brings new Oligo treatments to market ASAP.  Ultimately, Oligo Nation needs to be more than that, but what directions it takes will be based on what you and others want and share with us.  Collaborating and learning from each other will be a key to our success.  My hope is that you, me, and others affected by Oligo will work together to bring about a better future for survivors and their families.

Over the past few years, I have learned a lot about the realities of the current research  situation and what fundraising on a personal level is about.  There are three things I know with absolute certainty from my experience that I want to share with you. 

First, the status quo is unacceptable and offers no reason for hope that better treatments or a cure will be developed in time to help people living with Oligo today.  If you read the news about scientists discovering this and that, you might think that something good could happen soon.  I thought and hoped that for a couple of years until I looked into what was actually happening in brain tumor and Oligo research.  The answer was “not enough” and “nothing,” respectively.  With no funding for Oligo research, important discoveries in other areas will not be translated and pursued for Oligo.

Second, brain tumors are not rare and neither is Oligo. There are nearly 700,000 people living with brain tumors in America right now.  Probably between ten and twenty thousand living with Oligo.  Not to mention all the people who have lost family, friends or colleagues to brain cancer.  But while many other cancers have developed mainstream support and raised hundreds of millions, the awareness of the scope and severity of brain cancer is nearly non-existent.

Third, if the Oligo community works together, we will find a cure.  I know from personal experience that we can accomplish so much more than we can imagine.  Starting with no experience in fundraising and no real knowledge about brain tumors or research, a small handful of us have raised $1 million in 20 months (with the help of the National Brain Tumor Society) resulting in research that will start this Spring. 

The change has started, but we are trying to cure cancer.  It will take millions of dollars annually to reach our goals of effective treatments and, ultimately, a cure.

So ask yourself, what happens if several hundred or even several thousand Oligo affected families join our effort?  The answer is magic!  Two hundred people raise $5,000 each = $1 million.  Sound far-fetched?  It’s not, it’s conservative.  What I know, that you may not, is that anyone can raise $5,000.  Anyone.  The people in your life and community are ready to help, you just have to ask them.  I’ve seen friends and people I have never met before do amazing things to support my family in our fight against Oligo.

Fundraising is our #1 priority because it is the #1 need.  But there are other ways we can help each other and help our community, and OligoNation will try to facilitate these as well.  One example is that right now the National Cancer Institute (NCI) is trying to complete the portion of The Cancer Genome Altas (a genetic analysis of different cancers that provides the building blocks for medical research) for low grade gliomas, which includes Oligo.  However, they have been held up for over a year due to lack of tissue samples.  What we can do about this will be in another blog once I have confirmed with NCI the best way for Oligo survivors to insure their tumor samples are available to NCI.

OligoNation and the website will probably change a lot over the next few months as

Finally, I ask you to be brave, try something you are not sure you can do, and join this effort to change your own life or the life of a loved one.  It is not only absolutely necessary, it is empowering to exercise some control over this disease.  


About the author: Brock Greene