Chordoma Blog

Dear Chordoma Community,

I’m writing this letter from my local Starbucks. There is a meeting of regional baristas taking place next to me. They all look young. They just went around their gathered circle, stating their names, store locations, and how long they have been with Starbucks. Most of them have been with “the company” for longer than the average life expectancy following diagnosis for a Chordoma patient. That is sad. I don’t mean to sound trite, but that needs to change.

As far as treatment outcomes go, I am one of the lucky ones. I have gone six years without a recurrence from my initial surgical intervention. It’s not unheard of, but it’s not common either. In those six years, I watched as some of the people I met along the way — people who became friends — passed away. More precisely, they were killed by Chordoma. It may seem like a trivial distinction, but it is not. They did not get to leave this world, content with long and happy lives. Instead, a cluster of aberrant cells tore them from life. It is gut-wrenching to say, but I think it’s important to have a semi-combative perspective — it properly suggests a fight.

The first priority of those afflicted is to get yourself treated. Obviously, it’s not pleasant but there are many people — aside from your friends and family — who are willing to offer support. Considering how rare Chordoma is, the community is impressive. Whether it be communications by message board, email thread, or phone conversation, it is remarkably easy to solicit advice and support from someone who has already been treated — a Chordoma veteran. While there is room for improvement in the software that facilitates communications — a problem I am currently working on — the level of effort is very close to maximal.

The state of fundraising, on the other hand, leaves something to be desired. For most people, (myself included,) asking for donations requires swallowing some pride, but it must be done. We need to pay for the research ourselves. We cannot rely on the the kindness of philanthropic strangers or government spending. The holders of both purse strings have constraints on donating and spending that make Chordoma an unlikely recipient, even if it is a particularity good research investment.

My plea to the Chordoma community is simple: try to raise $5,000 for the Chordoma Foundation. If 300 chordoma familes raised $5000, it would be a tremendous amount of money relative to cumulative historical research expenditure — it could possibly change treatment modalities. Five-thousand dollars seems like a lot of money to raise, but it’s not. You don’t need professional “developers” or event planners to raise money; you don’t even need events. Shortly after I started the Chordoma Research Foundation, (now defunct as it was superceeded by the subsequently created Chordoma Foundation,) my parents wrote a very simple letter to our family and friends. In it, they very succinctly explained that without research, I would likely die young. They didn’t ask for a specific dollar amount, they just said I needed help. They have continued to do this every year and it consistently raises thousands of dollars per mailing. Granted, not everyone has a large extended family. (I am Italian and from New Jersey — certain stereotypes apply.) Nevertheless, it is not very difficult for anyone to raise a few thousand dollars by simply asking friends and family.

I hope I have not offended anyone with this letter. I would have preferred not to write it. I hate telling people what to do, whether it be by direct command or persuasion. Nonetheless, I believe what I said needed to be said, and my desire to not die from Chordoma greatly outweighs my discomfort. There is reason to have high hopes for a cure in the not-to-distant future. Not only does it help maintain some semblance of sanity, (for me, at least,) but it is also perfectly rational as advances are being made with impressive speed thanks to the Chordoma Foundation and some dedicated researchers. However, hoping for a cure while sitting idly by makes that hope more unrealistic. Without participation — that is, fundraising — that cure moves further and further into the future. The Chordoma community should not only be offering support, soothing injuries and recommending treatment paths. We have to fight actively — even zealously — for better treatments.

We have to fundraise.

Sincerely and with the best of intentions,
John (Johnny) Nelson

As always, feel free to contact me or leave a comment.

P.S. I understand that some people cannot fundraise because they are too busy trying to keep their heads above water, drowning in medical bills and lost wages. No one, myself included, expects these people to devote their resources to big picture problems when the immediate ones loom large.

P.P.S. I am partly to blame for the low fundraising participation rate. I wrote the initial version of Fundify (the Chordoma Champion’s pages) hastily and it was noticeably ill-tested. Before I cleaned up the initial version, I was offered an internship and took it, leaving Fundify in its bug-ridden state. That internship quickly lead to a job, and the broken state has persisted. In December, I quit my job to properly rebuild Fundify — work is in underway. (As luck would have it, I broke the scaffoid bone in my wrist promptly after quitting, adding a considerable delay.) Regardless, my software is meant to be a fundraising tool. It is far from a requirement. Waiting to fundraise for new tools to be in place is no different from purposely delaying research.