*** Random Philanthropy from your regular host:
Hey there, remember me?
I am aware that it was mentioned that I wasn't going to show up until next week, but I have reasoning behind it. I'll save trip stories and anecdotes for later and just cover the important stuff for a bit. I first got back and started catching up on random blogs/websites which I check up with on a regular basis and saw links to something called to the 24-hour Blog-A-thon. the navigation wasn't set up as well as it could have been for me to figure out what the hell was going on all that expediently, but eventually I got the gist. I was still rather non-commital as I never really thought about a charity to support. It's the classic issue of which one is worth the money? The American Red Cross or the American Cancer Society obviously does a great deal for a great deal of people, and of the blogs I've had a chance to look at that I generally read I saw two other worthy charities, Rabi's help for the Mr. Holland's Opus Foundation (which my band did a fundraiser for last year largely under the work of Gary Braham) and having played music for most of my life and being a lover of music in general it is a worthy cause and Mollie's support for the Yellow Ribbon Suicide Campaign, which has also been an issue I have had to deal with and certainly a very worthy cause. As much as I believed in those charities and their merits and many other charities (the list could go on for quite some time, I assure you), I never would have thought of them myself...it's kind of hard to explain, but despite a seemingly close connection to many a charity I just didn't feel connected to it. That won't stop me from donating, but it just feels different raising money on behalf of something that I don't feel strongly tied to.
So, I hadn't felt all that interested in actively participating beyond giving donations out (and they are coming, I assure you...just need to finish these damn papers and get on the ball), until a thought occured to me in hour 15 sitting in this lab writing about the structural geology of the Seminoe Mountains (I can't imagine why my mind would wander, can you?) and suddenly one occured to me. I have no idea if I ever mentioned it before, but within my family is a incurable genetic disease known as Huntington's Disease (sometimes also known as Woodie Guthrie Disease as he was one of the more prominent individuals to die from it). It works in traditional punnett square fashion as a dominant trait. If you have it, you have a 50% chance of passing it on to your children, if you don't have it there is a 0% chance of it going any further. In 1988, my grandfather died of the disease and it was kept as a family secret unbeknowst to me until I started exhibiting similar symptoms 10 years later. A nurse let it slip by accident in the patient interview and it snowballed from there. As it is incurable and terminal, beginning with a loss of motor control and ending with insanity, pain, and death I was understandably shaken. After numerous inconclusive tests (although never a definitive gene test as discrimination laws based upon genetic information were not yet in the books, but that's a whole other issue) it was decided at least that I did not currently have it and based upon my EEG and MRI data, would not have it for a significant amount of time if at all. I personally think I'm not going to come down with it, in part because of that data and in part because on occasion I have streaks of optimism about myself.
However, not everyone in my family has as good a chance as I do. My father's brother, who disappeared in 1982 for reasons which I won't go into at this time came down with the disease in 1987 and coupled with his reasons for disappearing felt too much shame about his disease to contact anyone. At my grandmother's funeral in April, he finally contacted us and will be dead within a year at best. At the funeral I met his children (my cousins) for the first time and talked with them the most. At this time it was unknown whether he had the disease or not, but what was clear is one cousin had two children and the other has one on the way. My brother also has a daughter and not any data to back up that he might have it. I almost feel selfish as I'm selecting something for a charity which may potentially benefit myself and those I care about, but it is a disease which gets little attention and also is far from causing a painless death, so that's the impasse I'm at. So, unless I get an email from Cat Connor of frykitty.com telling me my charity is a fraud or that I missed some form of technicality I will be blog-a-thoning on behalf of the Huntington's Disease Society of America. As a note, this was all impromptu, so if anyone knows anything disreputable about this charity (it appeared the best one I could find in a half hour search) please let me know. Any other comments would be appreciated. As for the other charities mentioned, I want to reitierate how worthy I think they are and the individuals supporting them are among some of the people who I most highly respect on the web or anywhere else so even if you disagree with my motivations or charity than I recommend at least checking out the ones they support.
Once again, I haven't yet recieved a confirming email, so that's why there are no fancy buttons at this time, but hopefully there will be some soon. And whne I get a free moment I will make this into a seperate page so that the links are more accessible. Finally, an application for my insomnia (what? you didn't expect me to remain serious the whole time, did you?)
No Stenny news at this time.
posted by David Wininger 1:24 AM |
link |