In 2004, I was diagnosed with a very rare type of cancer. Following my surgery and an extended period of reading the academic literature on the disease, it became obvious that I was not cured. Worse than that, there was little active research that had the potential to cure, or at least manage, Chordoma. Being an insufferable libertarian, I opted to start a 501(c)(3) organization, The Chordoma Research Foundation, with the sole purpose of aggregating funds and awarding grants to researchers.
At the time, (as a result of well-hidden bug,) I believed I would soon have access to a lot of money. Consequently, I formed the Chordoma Research Foundation as a funnel through which I could increase my donor potential (i.e. receive tax deductions.) I was largely uninterested in developing a proper full-fledged not-for-profit effort. I understood how research worked; the need for interdisciplinary facilitation; and the importance of starting projects sooner rather than later. I just wasn’t motivated. If my big payday came, I could buy research. Money opens doors. If I could spend my time doing what I had a passion for while being able to pay for research myself, it would have been ideal. My big payday did not come (and has not come – yet.)
Happily, pure dumb luck intervened. My parents, fueled by desperation coupled with a bit of good old fashioned common sense, decided to send a letter to our family and friends explaining our compelling need for research. The concise version: please give us money so our son has a chance of not dying before his thirtieth birthday. It raised tens of thousands of dollars – quickly.
Inspired by the success of this campaign, I envisioned a web-app that could replicate this success across many people affected by Chordoma. Unfortunately, it was a pretty uninteresting project. Web development is not intellectually stimulating. My potential big payday project was (enjoyably) intellectually exhausting. The brief inspiration and motivation I experienced after my parent’s campaign was insufficient. Instead of building my web application, I only designed a simple website explaining the cause to other people with Chordoma.
Serendipity intervened — again. By this point, my small website for a very rare disease was receiving about three phone calls per day – a not insignificant amount. Initially, this produced mostly friendships (shout out to Bill Dorland, Michael Torrey, and a collection of other friends who do not have URL end-points.) Soon, it yielded more tangible rewards. One day in August, while stuck in traffic heading to a Counting Crows concert, Simone Sommer called me. Her son, Josh, had gone through roughly the same experience as me and she also found the current state of research to be unacceptable. She wanted to be involved. To be precise Dr. Simone Sommer – a credential that, shockingly, opens doors in the medical community – wanted to be very involved.
Over the next few months and after many extended phone calls with both Josh and Simone, it became clear that they were willing to do all the things I knew had to be done but was uninterested in doing. More than that, Simone’s M.D. and Josh’s proximity to Duke – which housed one of the few researchers who was making headway into Chodoma research – meant they could do it better than I could. I (happily) passed the torch to them while I pursued my big payday (which is still, as of 2009, yet to arrive). They established the Chordoma Foundation. I dissolved my foundation and folded my assets into theirs.
For a while, I played a minimal ongoing role in Chordoma community. I continued to speak with a lot of patients, but only because I had already established relationships with them. I continued to follow papers on Chordoma – and discuss them at length with Josh – but that was mostly to satisfy my perpetual curiosity. (I am a if the plane is about to crash, I want to be in the cockpit type guy.) My father sits on the Chordoma Foundation’s board. I do not. My mother coordinates community outreach. I do not. However, late last fall, it became clear that they had reached the point at which money was the primary bottleneck. Earlier, the Chordoma Foundation had hosted a fantastically successful international, inter-disciplinary research conference. Cross-pollination of ideas occurred. Research was proposed…and, undertaken. Interest was piqued. Now, the low hanging fruits were gone. Now, there were calls for money. I was compelled to develop a prototype.
Initially, it worked well, although I am not convinced it raised money above what would have been raised anyway. It did help by connecting many people to each other, acting as an ad-hoc, emergent support group. This might not have translated directly into money, but it obviously was beneficial to the community.
Why didn’t it work as well as I expected? It was a sh*tty implementation! I hacked it together in four weeks in anticipation of the Thanksgiving fundraising season. We even launched it two days prior to Thanksgiving. It’s not really shocking that an idea only half-conceived was not fully-successful. Fundraising was not attributed in real-time; was not always accurate; and the feedback mechanisms employed were noisy. Additionally, one of the most important features, coaching (i.e. nudging) was never included. Unfortunately, disinterest asserted itself…again. I halted further development and took an internship in DC. Fundify was not yet to be.
Fast forward one year – present day. I just quit my job in order to properly build Fundify. This time, I am motivated. The project has not become interesting. It merely ceased to be something I can push off any longer. All paths are now dependent on larger grants being awarded. Larger grants require money. Enter, Fundify.
Stay tuned.
