EDIT: Please see the comments section of this post for some additional resources and links that were provided by my friend Jim. He also makes a very valid point about another unfairly, at least seemingly randomly ocurring disorder that also needs research at least as badly as MD/MS.
I meant to write this before Labor Day, but it somehow escaped me. Apologies for the lateness.
You may have noticed a link I have added over on the right. As most of you are aware (if you're regular readers), I've given to the Barack Obama campaign a couple of times this year. You may, however, not be aware that there is another organization to which I regularly donate. I'm speaking of the Muscular Dystrophy Association.
Many of you probably watched part of the Jerry Lewis Telethon over Labor Day Weekend. I watch it every year. I watched a lot of years before I started giving, mostly just because it's the cheesiest entertainment on the air, and it's bound to provide some cheap, unintentional laughs. Recently, though, I've started actually giving. I felt guilty about making fun of the show when it really raises some serious money for people doing God's work. Now, I give to the MDA, and I no longer feel guilty...though I do still make fun of the show.
Diseases like MD, MS, ALS, etc. are one of the few things I look at in life and I think, "that's not fair." Let's face it, a lot of life isn't fair, per-se, but you can at least figure out some explanation or reason for why something happened or is happening. Not so with diseases like those. They can strike anyone at any age, and for the most part there is no real cure. Treatments have advanced by leaps and bounds, but treatments are not cures. There is no cure for the muscle atrophy that takes place and there is no insurance check big enough to replace the use of your limbs. Other diseases at least give you a fighting chance. Most cancers are fight-able. There are cures to almost all of the major blood disorders. Even AIDS, which is incurable, at least most people got of their own doing--and at least you can pinpoint who to blame for it. The diseases researched by the MDA, though, are almost always random and almost always deadly.
That. Isn't. Fair.
The telethon's over, but the need isn't. I hope and pray for a day where we don't need the telethon anymore (and I hope it comes before Jerry Lewis dies--he's 81 and has done this for 50-some years) and that life can be fair for the kids and adults these diseases are as of yet still killing. I hope next Labor Day they throw a celebration because they found the cure, and the next year, they just air the old Martin and Lewis shows in tribute to the work that was done. ...but for now, the need goes on.
Please, if you've got the time to read my blog, you've got the time to visit their site. If you've got a couple of bucks you can throw their way, it could be the difference between a kid being diagnosed to die before he reaches 20, and a kid growing up to be a dirty-old-man.
Just thought that was worth saying, unlike 90% of the other stuff I say on here.
Remember...you can put lipstick on a pig, but someone still died from ALS today.
Thursday, September 11, 2008
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5 comments:
Thanks for this post Derek. My wife's family has some history of both MD and MS if I recall correctly. From my own experience, I'd put SIDS at the top of the list of "Diseases That Are Unfair". But in point of fact, it's likely that SIDS is not really a "disease" or even a "syndrome" as the acronym suggests. No one really knows the cause. I ... still don't have a great answer to that question, but I have faith that I will someday.
Regardless, you are absolutely right about the need! Here are some links that I found for donating to the telethon online that you should include in your post.
Welcome to MDA, Helping Jerry's Kids
National MS Society
Muscular Dystrophy Campaign
You raise an excellent point about SIDS. I've never really known what to think about that. That one probably should be #1 on the list. I just kind of gravitate toward MD/MS on these issues because it seems like we're so CLOSE to a cure...but yeah, SIDS should probably be on top of the "unfair" list.
Honestly, I'm not sure you could empirically and scientifically create a "top 5 list of horrible diseases that are the most unfair" in any sort of meaningful way. Everyone will have an opinion, likely a strong one (especially if they have family history in one or the other). I'm not sure you'd want to spend the time on the debate anyway, as it doesn't sound like much fun. Rereading my comments above, it sounds just a touch like I was wanting to start that debate OR that I was disagreeing with you OR ...something. I know you understand that is not what I intended, but I'm saying it publicly anyhow. It was more like "I totally agree with you, and also don't forget about..."
Your post has really been making me think quite a bit. I've got more to say on this subject (unfairness) and I hope that's okay...
Oh, I absolutely read it the way that you meant it. I hope everyone else that might have read it took it the same way I did. I just thought you had a really great point about SIDS being on the list. I started Googling research-groups after reading that, actually.
I'd love to read whatever you've got to say.
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