The Genesis of Oligo Nation
“This is how I tell it, ohhhhhh but it’s long…”
One Sunday Morning—Wilco
The Greene Family
If you or a loved one has been affected by an Oligo, you will recognize parts of our story. Of course, it starts with the shock of the diagnosis. For us it came on August 1st, 2008. Our almost 17 year-old son Spencer had been experiencing focal seizures in his right arm when he played soccer. After three months of eliminating possible causes, an MRI confirmed a brain tumor the size of lemon in his right frontal lobe. We had no idea that a brain tumor was a possibility and knew nothing about them. We were all in shock.
|At Zach’s UCLA graduation 2011|
A few days later, Spencer had 8 hours of surgery to remove as much of the tumor as possible—it was pushed up against his motor center, so they had to be cautious. After five days in pediatric intensive care unit, he came home and started his recovery. He returned to school after three weeks, but wasn’t really himself again until the new year. He graduated in June 2009 and deferred college for a year to see what the future would bring. We spent the next 20 months doing the MRI thing, hoping that the tumor would stay quiet for a long time. In April of 2010, he had another focal seizure which announced that the tumor was still active. In May, he was told he would need to go on chemo for a year. So our planning to try to protect his freshman year in college was out the window.
In June, before Spencer started Temodar treatments, we took a family vacation to Mexico. Our older son, Zach (then 21) joined us there with his girlfriend. A few hours after arriving we were sitting down to dinner when Zach had a grand mal seizure. Scariest experience of my life. We returned home and the MRI revealed that Zach had a brain tumor as well. During our initial meeting with Zach’s surgeon, he told us that these tumors “always” come back (nice bedside manner!). Fortunately, they were able to remove all of his tumor and he made a miraculously speedy recovery--in three weeks he was back in Los Angeles.
The Birth of the Oligo Research Fund
For Pam and I, it was impossible to understand how this could happen to both our children. It was more than I could handle initially, but by the end of 2010 I realized that with the most important people in my life at such risk, I was going to have to find a way to “save” them.
|The Day after Zach's Surgery, July 2010|
I started by making a donation to the National Brain Tumor Society (NBTS). A few weeks later I checked out their website and realized they were not funding any Oligo research. Then I checked the other brain tumor foundations—no Oligo research. So I called NBTS to see what could be done. They told me that they would create a dedicated Oligo research fund…if I would lead the fundraising effort. They also told me that they couldn’t start the research process until we had reached $300,000. Of course, I agreed.
I had never done any fundraising, so I did the most obvious thing: I sent a letter—with an overview of the boys—to family, friends, and people in my community that I knew at least a little. For two weeks, I didn’t hear from anyone. I started worrying “what if no one responds?” Then I got a message from one of my childhood friends saying he and his wife were donating $10,000. I cried with relief and joy. Overall, the response was amazing, with over $100,000 being committed.
|Zach and Kelsey in 2012|
The next step was a community event that we ran through our local high school in Spring of 2011. Zach worked with the students and I recruited restaurants and local merchants. Overall, Fighting for the Cure raised $40,000 with over 700 people donating.
With the help of NBTS, word got out to a handful of other families affected by Oligo, and so our ranks grew. These people were just as committed as I was and with their efforts, we reached $1million in less than two years.
After Fighting for the Cure, I came to the realization that even if I did everything right in my personal fundraising efforts, it would not get us the kind of funding for research we need. When you multiply any number by 1, it just isn’t very big. It was clear that we needed to be multiplying by 100 or 300 or 1,000. That was part of the thinking behind Oligo Nation, getting some of the more than ten thousand affected by Oligo to join us. The other part of it was that I had seen how easy—and personally rewarding—fundraising was. I know that any adult can raise $5,000. I think for most of us, raising more than that is very doable.
|Pam and Spencer in 2013|
At the same time, I know that Oligo families are dealing with a lot. And for most of us, doing something new is uncomfortable, maybe even a little scary. So we want OligoNation to be a resource that can help you get started, get advice, and share successes. That’s why we provide ideas, samples and “how-to’s” for different kinds of fundraisers.
Fundraising for medical research has to be our first priority since no one else is doing it and, ultimately, without effective treatments for Oligo survivors nothing else matters. But we hope to become a platform to help our Nation advocate for Oligo interests and a place where we can share experiences and support each other. One thing is for sure, what OligoNation becomes will have as much to do with you as it does with me.