John Nelson

Information Journal Guestbook

In early January of 2003, certain areas of my field of vision suddenly doubled. Being that it was only a day or two after New Years, I thought it was due to excessive New Years…social activities. However, the symptoms persisted so I went to see (several) doctors. The end result was a diagnosis of mono (yes…as in the socializing virus). Shortly thereafter, my symptoms disappeared.

In early January of 2004, the double vision came back, although it worsened much more quickly. It was quite clear that mono had been a bad call. The (new) doctors found what was likely to be a Chordoma on my MRI films. Surgery was scheduled and I had a transsphenoidal resection in late February. The surgical outcome was the best possible – the surgeon achieved a "full" (in the macro sense) resection.

Once I was able to sit up without throbbing pain (a major victory), I began researching Chordoma. I did not like what I found: Chordoma was very rare, research efforts were non-existent, and the recurrence rate was dauntingly high. Being a budding capitalist / libertarian of the insufferably self-righteous variety, I decided to start a non profit foundation to raise funds for Chordoma research. The Chordoma Research Foundation (CRF) was born.

From the beginning, CRF had a clear and simple (read: naïve) intent: raise money and pay for projects. At the time I was overconfident in my own abilities and thought the best way to raise money was simply to make a whole mess of it (This was not necessarily naive. I am very skilled in a few areas and the expectation of very large financial gains were not crazy.) I operated under this a premise while my parents wrote letters to family and friends asking for donations. We raised an impressive amount (and the Fundify fund raising concept was born).

I had also put up a web page for Chordoma and was fielding a few calls from patients and affected parties per day (given 300 new cases per year, this was A LOT of calls). Later on, one of the callers was Simone Sommer who did research after her son, Josh, had a Chordoma. Obviously, she and Josh also did not like what they saw and shortly thereafter they formed the Chordoma Foundation with more (appropriately) elaborate plans. The CRF folded its assets into the Chordoma Foundation later that year.

This brings us to present day. The web page you are currently browsing is part of a system I built called Fundify. I am hoping this will empower the Chordoma Foundation’s impressively large following with the ability to effectively raise money. If this happens, the potential projects in the pipeline could be funded and possibly lead to a cure. At which point, my Chordoma story will be concluded.

I currently have no evidence of disease. This does not mean I have no disease. In all likelihood, it will return. When it does I want to be able to undergo systemic treatment that actually has the potential to eradicate the cancer, not just take out chunks of it.
Given the rarity of Chordoma, the burden of funding and advocacy falls upon the shoulders of those affected by it (As it should. Remember, I said I was an insufferable libertarian.)

To someone who does not know anyone affected by Chordoma but is in a philanthropic mood, I would suggest you donate for different reasons. Chordoma is terribly rare and under-researched. A good deal of the research projects that we want to fund merely applies modern medical research techniques to Chordoma. Consequently, research is still in that lovely area of exponential returns. If you are philanthropic and want your donation to have the most bang for the buck, there are few opportunities with a higher risk / reward ratio than Chordoma research (again…insufferable libertarian).