The joys (sarcasm) of charitable fundraising for a rare disease (NF2)
February 20, 2016
Wednesday, February 10th marked my 12th anniversary as a hockey blogger. That’s a pretty huge milestone as bloggers don’t usually last more than 3 years… let alone 12! Oh, Stonegauge is probably older than that – though I did not have many entries the past few years. To mark the occasion I brought up the genetic/neurological disorder I’ve been dealing with since I started, and started a charity drive called Deke the Deuce. The money is going to a Tampa Bay area based Neurofibromatosis Type II charity organization.
Big time blogger raising awareness and pulling in dollars to aid the fight against NF2! Cute name for the drive too!
Yeah, well, what I’ve learned in the past week-plus of the drive is that charity fundraising is tough even if you have a huge reach through social and general media. You may have a wide number of readers or thsoe exposed to the drive by way of retweets and Facebook shares but if someone doesn’t connect to the cause, why would they hand over a nickel, let alone the amount of cash that would actually show up on the charity page?
I don’t know the best way to “update” the page. Anything I say is too personal and too thin an audience sees it. Yet I have to connect and personal is the only way to do it. But telling people how you went deaf? What life can be like in deafness or even just hard of hearing?
The fact I’m also mostly pushing this at hockey fans hurts things too just because I’m not sure how to give it a broader appeal.
I plan on running thins through March 16… I don’t know if I’ll even reach $500, but the money raised is better than nothing. And I HAVE enlightened some people and introduced them to the disorder in general.
I'm a long, long time online personality in the realm of sports and blogging. I also suffer from the rare genetic condition neurofibromatosis Type 2. You can read a bit more about me on the official "About" page here on Johnnyfonts.com