But back to ice bucket challenge: I'm now seeing articles that state that only 27% of money raised by the ALS Association actually go into ALS research. A lot of the other money goes into lobbying efforts, to get the policy makers on board and hopefully get legislation that would lead to more funding for research, presumably.
I think everyone who has participated in the challenge is doing it for a good reason -- they want to help, and they are helping, somewhat. But the thing as gone so bloody viral and people have no time or inclination to research (ha) the organization the money is funding. Myself included. I have mixed feelings about what seems to be a paltry percentage going to actual research. I don't know how other organizations do it, like March of Dimes, American Diabetes Assoc., etc. I looked up the MS Society and see that they claim 83% of donations go to "Research/Programs/Education." Within that 83%, what percentage goes to research? And what are the programs and education components? I'd like to see more transparency.
My blogger friend Elizabeth had a post recently talking about the fight for public money for all the various diseases out there. Her friend Yvonne makes a compelling argument for public funding of research dollars as opposed to relying on individual donations when making research decisions. But this is America, and that would be socialized medicine, don't you know? The stuff of commie pinko nations with poor, devastated national health care systems with a high percentage of bad outcomes? (If you believe this, watch "Sicko.")
The problem of funding health care and research is a complex one. I feel the same way about funding education in this country. Why should it be left up to how much funding in property tax a school district can expect? Why isn't there a national education policy that ensures equal access to education for all citizens K-12 and college as well? People coming up through the school system are the future of this country, yet we invest paltry dollars into providing them with a world class education.
I don't know where I'm going with all of this, but I do know that I have made an investment in Laine's documentary that I can feel proud of. Whether it gets made or not, I'm helping her crew with their filming costs and it's a risk I'm happy to take in hopes that the film is produced. If you'd like to see information about her documentary, and how you can help, go to this link. There are many levels to donate, and she would be happy with whatever you can do. So would I.I call on all my creative friends to seriously consider a donation. WE know how hard it is to get our work made and out there in the world. Help a fellow artist in her quest -- I think it will be an inspiring and uplifting documentary film and I can't wait!
yes yes yes.
ReplyDeleteI hate the pink ribbon campaigns, too. And I REALLY hate "supporting" some disease because it is cute or well-known or whatever, when a lot of the money is not funding either research or direct support of sufferers.
ReplyDeleteOn a support group website, I got kinda disssed for expressing the opinion that this fairly rare and really difficult kind of dementia was not the "popular" dementia, the one that has its own tiara, the one popularly perceived as grandma just losing memories. The person who objected is apparently humor deficient, but -- yeah, the Big A can of course be bad. My point really was that a disease doesn't need to be the groovy well-known one to deserve attention.
I try to give directly to research, or to support particular people in a difficult spot. It's kind of cool that ALS is at least getting attention -- but I'm not a deep pocket. Need to pay attention to where I can really make a difference.
xoxo
The kind of dementia my SIL has -- early onset, and very trying -- is something they are still trying to figure out. It may have some links to other brain based diseases. I'd really like to see a lot more public funding for research, across the board.
ReplyDeleteyes, early onset is especially terrible...I know someone with direct experience. It robs you of your loved one, slowly, slowly but surely. "The long good-bye."
DeleteSorry for being such a grumpy-butt. My SIL's thing is actually associated with ALS; and there is some overlap in diagnoses. I'd really rather my few bucks go to the basics, not supporting a fundraising structure.
DeleteGo, Laine! Tara, art's worth supporting, too.
Thanks for the shout-out Tara, and I'm very intrigued by your friend's documentary! I've donated and look forward to hearing more about her project if and when it progresses. The notion of going on the road to meet my internet friends is so appealing to me. Maybe I could do it in that Airstream that I've coveted for years. I love the whole idea that real connections are being made and will be substantiated. Thanks for sharing.
ReplyDeleteYou're quite welcome -- your post really got me thinking. Yes, doesn't a road trip like that appeal? I was going to go with her as her sound tech, but between getting married and moving to a new house, the road trip vanished off my calendar. Thank you for your donation!
DeleteThis was an interesting article you wrote covering a lot of my own concerns and thoughts. You put it succinctly how we are not doing a lot of what is important.
ReplyDeleteHas your friend tried for arts funding? I know there are grants out there for some projects and also know it can mean jumping through a lot of hoops; still might be worth investigating if she has not. Recently I've seen a lot of crowd funding projects with various goals. One person needed $1,000,000 to fund a movie of her own book. If i remember right, she was offering some perks for various levels of donations. An author was looking for donations for his wife's documentary on I think penguins although I'm iffy on exactly what but the woman did the documentary on the parrots of San Francisco a few years back. Another was looking for $20,000 to fund a play on aging creatively. There have even been authors asking for money so they can quit their jobs and write full time. I have no idea how they all work out. The play one did fizzle as only a few hundred came in. It's always worth asking and once in awhile something does catch the interest of enough small donors to get what is required. I wish her luck.